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# Danny van Leeuwen    Health Hats

Learn with people on the jouney toward best health

## Sitemaps

- [XML Sitemap](https://health-hats.com/sitemap.xml): Contains all public & indexable URLs for this website.

## Posts

- [Blog](https://health-hats.com/new-health-hats-blog/) - Jun 14 Love0 Alone in a Dark Hospital Room, She Asked Claude By Danny van Leeuwen Advocate, ePatient, Podcasts, Video Spread the love Podcast: Play in new window | Download (Duration: 33:06 — 26.5MB) | Embed Subscribe: Apple Podcasts | Spotify | Email | RSS | More Using AI to track symptoms, weigh medication options,
- [Bonus #1: Exploring the World of Podcasting. Insights & Musings](https://health-hats.com/pod200/) - Exploring the world of podcasting and the challenges we face in storytelling, sound editing, & decision-making. We reflect on the evolution of our journeys.
- [#10 Best Medical Care for Emerging Adults w Mental Illness](https://health-hats.com/pod198/) - About McLean Hospital. Referrals, COVID impact, capacity, stigma. Still need more resources & shift towards treating mental health on par with physical health.
- [#11 View From Medicaid:  Emerging Adults w Mental Illness](https://health-hats.com/pod199/) - Dr Herndon, former Medicaid CMO: challenges faced to improve mental health care for emerging adults. Better support systems for their transition to independence
- [Alone in a Dark Hospital Room, She Asked Claude](https://health-hats.com/pod249/) - Using AI to track symptoms, weigh medication options, and advocate. Not a cure, a toolkit. An honest, careful path without handing over the wheel.
- [Nurses’ Week, Handel’s Messiah, Oldest Maternity Hospital!](https://health-hats.com/pod248/) - From a 10-bed lying-in hospital to Handel’s Messiah, the Rotunda Maternity Hospital has operated continuously for 281 years. A Nurses’ Week story.
- [Participatory Governance: Right People Right Question](https://health-hats.com/pod247/) - Participatory governance in healthcare means asking the right people the right questions. Three stories where listening as leadership changed everything.
- [Transparency in AI: How the Sausage Gets Made](https://health-hats.com/pod246/) - Transparency sounds simple until you're standing in a meatpacking plant. Health Hats digs into what we want to know—and why it matters.
- [Crutches, Caves, and Currents: Tubing in Belize](https://health-hats.com/pod245/) - Health Hats walks & floats through ancient Maya caves in Belize with forearm crutches, teamwork, trust, and shared decision-making every step of the way.
- [If You Have a Body, You're an Athlete: Training for MS](https://health-hats.com/pod244/) - Former Nike exec Mark Hochgesang interviews Danny on Heavy Hitter Sports Podcast about MS & being an adaptive athlete. Just back from Belize! Training works.
- [Trust Me, I’m Deciding. When Data Meets Doubt.](https://health-hats.com/pod243/) - Trust: 120 episodes and still learning. This time: how we decide to act on health data. It's messy. Let's wade in together.
- [Retirement Improvisation - Onward: 2025 Holiday Letter](https://health-hats.com/pod242/) - Health Hats Danny celebrates 50 - years with his honey & pounds lost. With gratitude for privilege, & best health thru family, media, music, travel, & advocacy.
- [A Third on the Shelf: Rethinking Power in Community Research](https://health-hats.com/pod241/) - Kirk & Lacy on shifting research funding away from federal grants: what happens to community partnerships when the money—and the rules—change?
- [Give Me My Damn Data. Then What? Managing Permissions.](https://health-hats.com/pod240/) - Your health data belongs to you—but how can you safely share it? Fabienne Bourgeois, MD, reveals the messy reality of privacy, permissions, & data control.
- [Catch-22.0: AI Creates Problems It Solves](https://health-hats.com/pod239/) - Healthcare AI isn't a tech problem—it's a mirror reflecting how our health system already fails. Uncomfortable truths from Datapalooza 2025.
- [Letter: Trust Me, I’m Skeptical](https://health-hats.com/pod238/) - Letters beat emails for trustworthiness. A gullible skeptic reflects on navigating trust in a 50-year marriage, and the energy cost of distrust.
- [Listen First, Lead Together: Advocacy and Power Dynamics](https://health-hats.com/pod237/) - Ronda Alexander on strategies to build inclusive health coalitions, manage power dynamics, center marginalized voices, & design sustainable governance.
- [Never leave your shit on someone else’s farm!](https://health-hats.com/pod236/) - Exploring bird flu prevention with farm owner Shannon Hayes. Discover boot washing, flock protection with coyotes, and best practices in biosecurity.
- [First We Listen, Then We Act. Informatics in Decision-Making](https://health-hats.com/pod235/) - MS patient turned healthcare disruptor shares why your biggest "problem users" are actually your most valuable system improvers.
- [Pod People, Participatory Governance during COVID](https://health-hats.com/pod234/) - These families created a pandemic pod with clear rules & shared childcare. While adults navigated anxiety, their kids called it "the best time of their lives."
- [MS: My Door to Peak Performance](https://health-hats.com/ms-my-door-to-peak-performance/) - Peak performance depends on equal shares of genes/biology, circumstances, effort, and luck. MS opened my door to peak performance.
- [Afro-Cuban Jazz and Helping Hands: Cuba's Accessible Beat](https://health-hats.com/pod233/) - Who needs Spanish when you've got a saxophone? A music-lover proves that disability access is just another improvisation in Havana's jazz scene.
- [Make America Jenga Again](https://health-hats.com/pod232/) - This metaphor portrays critical national systems dismantled by dangerous, disconnected actors, suggesting irreversible damage requiring collaborative rebuilding
- [Chiropractic – Operating at Peak Performance](https://health-hats.com/chiropractic-operating-at-peak-performance/) - I’ve learned much from Dr. Keith Puri about maximizing my gross motor capabilities through good habits. I’m indebted to him. His peak performance maximizes my capacity.
- [My Optometrist Saved My Life](https://health-hats.com/my-optometrist-saved-my-life/) - My optometrist taught me the value of a small, repetitive practice that changed my brain pathways, my vision, and my life. Vision as a barometer of stress.
- [The Ch’i of Covid-19. Invincible.](https://health-hats.com/the-chi-of-covid19-invincible/) - The Ch'i, Covid19, Chinese medicine, lungs & spleen. Warm water, less sugar, exercise, sleep well. Find 1 source of less depressing news. Connect. Invincible.
- [Massage Therapy. Multiple Sclerosis. Release and Restore.](https://health-hats.com/pod123/) - Another member of my health team, Endre Papp, massage therapist, Making the best use of an engineer and designer’s approach to bodywork. Good for what ails me.
- [Family Practice – The Cornerstone of My Team](https://health-hats.com/family-practice-the-cornerstone-of-my-team/) - I love my family doc. If you’re not happy with your primary care doc, find someone you trust to help you find another one. She’ll be your cornerstone. Interview with Dr. Laura Zucker.
- [Healthcare AI for Humans: Governance, Research, and Rights](https://health-hats.com/pod231/) - Data scientist Emily Hadley on navigating AI in healthcare, offering practical advice for maintaining patient agency amid algorithmic decision-making.
- [Navigate Chaos, Adapt Our Voices, Leverage Privilege](https://health-hats.com/pod230/) - What can I do, how do I respond, who is my community? Action within my abilities during this health, care, and community disruption while prioritizing self-care
- [The Missing Voice: Bridging Research and Real-World Care](https://health-hats.com/pod229/) - Successfully sharing & acting on research findings depends on active partnerships with the implementers – patients, caregivers, & their clinician partners.
- [From Hot Jazz to Cold Nose: 2024 Health Hats Holiday Letter](https://health-hats.com/pod228/) - A snowy tale of our hero's travel adventures, suffering from battery anxiety, making enough as a musician for a cup of coffee, set to Latin and Hot Jazz music.
- [From Dick Tracy to AI:  Out of Mind to Beyond Mind](https://health-hats.com/pod227/) - Demystifying AI's evolution,from Netflix recommendations to ChatGPT,exploring how neural networks learn & why even AI creators can't fully explain how it works.
- [Foreboding and Morbid Curiosity](https://health-hats.com/pod226/) - Reflecting on community & self-care post-election. MS teaches patience. He adjusts media habits, finds strength in family history, music, & trusted connections.
- [AI: Neither Artificial nor Intelligent. Useful and Sobering](https://health-hats.com/pod225/) - What kind of Artificial Intelligence does Health Hats, the Podcast, use in production? Understanding types of AI, transparency, and ethical considerations.
- [Camino de Santiago. Pilgrimage of sounds.](https://health-hats.com/camino-de-santiago-pilgrimage-of-sounds/) - I find myself on a pilgrimage of sounds. Disabled. Left out. Mobile. Podcasting in Spain from my wheelchair.
- [Days 6-12 Camino de Santiago. Rejuvenated, inspired, not yet peaked](https://health-hats.com/days-6-12-camino-de-santiago-rejuvenated-inspired-not-yet-peaked/) - Quieting my mind. Listening as rejuvenation. Inspired. Mobility package that works. Sounds of tap, tp, tap of my canes, white storks and cathedral bells chiming.
- [Portugal Camino Pilgrimage: Training with Disabilities. Fun.](https://health-hats.com/pod162/) - Not about walking miles & managing shoes. My training includes mobility and audiovisual prep. Bear with my experiment. Podcast, YouTube, & article. A bit rough.
- [Reprise: Camino de Santiago. Rejuvenated, Inspired #21 & 164](https://health-hats.com/pod164/) - Heading to Portugal. Ready. Listen to last episode from '19 Spanish Camino. Sounds of tapping of my canes, white storks, cathedral bells chiming. Stay tuned.
- [From Here to There: Accessibility on the Camino de Santiago](https://health-hats.com/pod166/) - Managing rural and urban travel with my set of abilities. Roots, dips, inclines, Roman roads, elevators. falls. We did 170 miles (I did 70). A hoot and a half.
- [Costa Rica – Travel with Abilities](https://health-hats.com/pod191/) - Costa Rica welcomes travelers with disabilities. Juve Acuna, travel guide, spent a week with us sharing his expertise in flora, fauna, history, & disabilities
- [Accessible Off-Road Travel in an All-Terrain Wheelchair](https://health-hats.com/pod223/) - Philip Shadle, CEO, Aimee Copeland Foundation opens outdoor accessibility for disabled individuals with all-terrain wheelchairs. My ndorphins flow. Yeehaw!
- [Insight to Impact: Patient Voices in Health Tech & Policy](https://health-hats.com/pod224/) - Effective solutions & ethical guardrails for data-driven decision-making, care, & treatment require patient involvement in policy & technology development.
- [Communication Ninjas: Practice, Trust, Evidence](https://health-hats.com/pod222/) - Aaron Carroll, CEO of Academy Health, discusses his journey to improve health systems & decision making through community engagement & repetitive communication.
- [Adieu Mighty Casey, Flow On](https://health-hats.com/pod221/) - Family and friends dispersed Might Casey (Mary) Quinlan’s ashes in the Gulfstream, reflecting on her life and sharing outrageous and mundane pics and stories.
- [Exploring Long Covid One Spoonful at a Time](https://health-hats.com/pod220/) - Shana Davidson shares her day-to-day Long Covid challenges using the "spoon theory," a metaphor for the limited energy reserves people with chronic illness face
- [Fibromyalgia. Managing Pain. Doing the Work.](https://health-hats.com/fibromyalgia-managing-pain-doing-the-work/) - Melissa Reynolds writes about the puzzle of Fibromyalgia, chronic pain, and pregnancy, separately and together. She inspires me. Listen to the podcast
- [Fibro Mama - Book Review](https://health-hats.com/fibro-mama-book-review/) - Fibro Mama: Pregnancy and Fibromyalgia by Melissa Reynolds Odd, isn't it? A book review about pregnancy and pain by a guy! Well, I'm a dad, an Opa (grandpa), registered nurse, and a patient activist. I have Multiple Sclerosis and I know chronic illness and pain management. We had home births with a midwife at one
- [A Forrest Gump Career: Chance, Gifts, Support, and Privilege](https://health-hats.com/pod219/) - Grandson interviews Health Hats about his Zelig-like career path and choices: unpredictable, privileged, mentored, supported, and spiritually healthy.
- [Camden Coalition. The Jury’s In. Long-term Partnerships Rule](https://health-hats.com/pod218/) - Kathleen Noonan’s quest to build bridges between communities & researchers with long-term relationships & respect for experience & expertise, just like juries.
- [Coffee Insights: Flavor, Notes, Health, and Justice](https://health-hats.com/pod217/) - Exploring the journey of coffee from farm to cup with expert Jen Stone, delving into flavors, cupping, & the ethics of coffee production. Music & Health, too
- [#15 Cultural Humility: Curiosity Failure Critique Respect Growth](https://health-hats.com/pod207/) - Immersion into cultural humility needs curiosity, addresses power dynamics, embraces failure, meditates on self-critique, & fosters respectful relationships.
- [Rebels in Health – the Enemy is Disease](https://health-hats.com/pod216/) - Susannah Fox’s "Rebel Health" on the power of Seekers, Networkers, Solvers, & Champions in driving patient-led innovation & the communal fight against disease.
- [Bonus #5: Continuous Learning in My Sandbox](https://health-hats.com/pod215/) - Celebrating my audience. Describing my multimedia journey, stats, ongoing advocacy, future episodes and a musical bonus featuring the host on the Bari Sax.
- [Trust: Willing to be Vulnerable. Worth the Investment.](https://health-hats.com/trust-willing-to-be-vulnerable-worth-the-investment/) - Best health builds on trust – trust in people, institutions, information, and solutions. Interviewing Dr. Jody Platt: Act in my best interest. Makes life easier.
- [Covid-19: End-of-Life Choices](https://health-hats.com/covid19-end-of-life-choices/) - Each death from Covid19 is a family's misery. Palliative care = feeling less miserable. Have you discussed end-of-life and palliative care with your family? Do it now.
- [Safe Living in an Epidemic](https://health-hats.com/safe-living-in-an-epidemic/) - Helping people trying to live safely in COVID world? Listen to people, hear their questions. Can we find trusted evidence-based guidance? A daunting challenge!
- [May the Force...](https://health-hats.com/may-the-force/) - Survive tragedy, the unifying force of life, with resilience. Resilience, best spiritual health, like patience, requires exercise, and maybe a coach.
- [Crossing Thresholds](https://health-hats.com/crossing-thresholds-2/) - A threshold is a beginning, a change. Before we weren't, now we are. Crossing a threshold can energize or suck energy. A companion at these moments can be huge.
- [Young Adults Crossing the Threshold from Pediatric to Adult Healthcare](https://health-hats.com/young-adults-crossing-the-threshold-from-pediatric-to-adult-healthcare/) - How can we be good hosts to young adults as they cross the threshold from pediatric to adult healthcare? Can you help me?
- [First, We Listen](https://health-hats.com/first-we-listen-2/) - Listen first - works for podcasting, leadership, advocacy, and clinical assessment. Listen, then use your privilege to open doors.
- [State of Inclusion. Ame Sanders, Equity Warrior](https://health-hats.com/state-of-inclusion-ame-sanders-equity-warrior/) - Bias, inclusion & equity from outside healthcare. Interview with Ame Sanders. Our own biases, inclusion in our communities, taking action to reduce inequities.
- [Citizen Participation in Rare Disease Research. It’s Rare.](https://health-hats.com/rare_disease_research/) - Hire citizen experts for bench jobs and leadership positions, to inform networks, recruit diverse experiment participants, disseminate results.
- [Not one transition. Many.](https://health-hats.com/not-one-transition-many/) - Parent of teen w/ health issues since birth shares journey. Accepts what is, helps dau prepare for transitions, fears losing control. Loving, determined, vulnerable.
- [Special edition for blog subscribers only](https://health-hats.com/special-edition-for-blog-subscribers-only/) - Health Hats, The Blog is changing. But I never asked you if it was OK with you, what you think of it, or for your constructive criticism. This is me asking you now.
- [Unplugged and Reconnected. A Day of Rest.](https://health-hats.com/pod209/) - Day starts with angst, leading to screen-free day, reservoir walk, visit to farm stand, reading real book. Revived with renewed sense of gratitude & well-being.
- [Best Health: Different lens, Different point of view](https://health-hats.com/best-health-different-lens-different-point-of-view-2/) - This first blog begins to set the stage. "Best health". How will we recognize best health? For individuals, could it be love, peace of mind, a cure, ability to complete activities of daily living, or freedom from dis-ease? For organizations, could it be making a profit, growing volume, high overall satisfaction or NetPromoter score?
- [Fear, Shame, Access, Connection -Privacy in Digital Exchange](https://health-hats.com/pod214/) - Fred Trotter on the balancing privacy & connection, the role of AI in societal judgment, and practical privacy protection strategies with a nod to Mighty Casey
- [Reflection on Advantage during the Holidays](https://health-hats.com/pod213/) - Lisa Stewart interviews Health Hats, to discuss family, music, & listening to younger activists taking over navigation & reform of healthcare.
- [What Do You Do for Fun?](https://health-hats.com/fun/) - As we age, some functions slide, some grow. I’d like to maintain, on average, for as long as possible, with fun doing it. Consider a coach for self-care.
- [Money Back Guarantee: Value Proposition](https://health-hats.com/money-back-guarantee-value-proposition/) - Selling the idea that patients and caregivers should have a seat at the table don't we need a clear value proposition? Is there an equal relationship?
- [More: Journal for Best Health](https://health-hats.com/more-journal-for-best-health/) - More about keeping a diary for best health-living at maximum capacity. Tracking and journaling supports experimentation. Figuring out what works for you.
- [National Action Plan to Better Manage Pain](https://health-hats.com/national-action-plan-to-better-manage-pain/) - A National Action Plan to Better Manage Pain. How can managing pain improve through patient-centered clinical decision support? Please read and advise.
- [Journal for Best Health](https://health-hats.com/journal-for-best-health/) - Maintaining best health requires daily effort including setting goals, making plans, journaling, and adjusting. It's your experiment.
- [Managing Pain - A Reality Check](https://health-hats.com/managing-pain-a-reality-check/) - Perspectives about managing pain outside the academic/tech/policy bubble: Describing pain, goals of pain management, working with doctors, and offered other resources.
- [Advocacy Pearls](https://health-hats.com/advocacy_pearls/) - Pearls of wisdom as a patient/caregiver activist. Show up, listen, then speak up. Failure is precious. Learn from it. Feed your network. Have a blast.
- [Patient Engagement - Careful What You Wish For](https://health-hats.com/patient-engagement-careful-what-you-wish-for/) - From whose point of view? Person engaged in their own health, clinician engaged in patients' health, adherence, or a seat at the table. Careful what you wish for!
- [Power, Fear, Lack of Empathy](https://health-hats.com/power-fear-lack-of-empathy/) - Those in power want to stay in power. Imbalance of power is evident in immigration and the Supremes. Our power is in the ballot box. Elect people with lived experience who grew up farther from power and wealth.
- [Putting Patients at the Center of Pain Management Decisions](https://health-hats.com/putting-patients-at-the-center-of-pain-management-decisions/) - Clinical decision support (CDS) researchers, developers, and implementers: Consider the patient perspective in making choices about pain management and opioid use CDS.
- [Medical Marijuana - A Strange Trip Indeed](https://health-hats.com/medical-marijuana-a-strange-trip-indeed/) - Is there a relationship between the science and the dispensaries? How do you compare mgs and %'s? Vape, oil, tincture, and peanut butter? I'm an N of One. Oh my.
- [Stoking My Fires](https://health-hats.com/stoking-my-fires/) - So much to do. Limited time. Prioritize. Have fun. Stoke your fires.
- [CMS: Use Patient Experts in Measure Development, but Don't Pay Them?](https://health-hats.com/cms-use-patient-experts-dont-pay-them/) - CMS accepts recommendations to include patient experts in measure development but doesn't recognize that patient experts should be paid for their expertise.
- [2018 Healthcare Literacy in Research Conference](https://health-hats.com/harc2018/) - Looking for co-produced research about lay people, professionals, and communities understanding each other to increase useful knowledge about less illness and best health.
- [Pain Management Choices: One Person's Point-of-View](https://health-hats.com/pain-management-choices-one-persons-point-of-view/) - One POV bringing real-world experience to the clinical decision support industrial complex. Only a small proportion of decisions are medical. Most are function, lifestyle, safety, & more.
- [Best Health at End of Life](https://health-hats.com/best-health-at-the-end-of-life-a-celebration-hhp001/) - Best Health includes physical, mental, and spiritual health. Mike Funk, my son, age 26, found his best spiritual health in the last year of his life as he died.
- [Best Spiritual Health, Dying](https://health-hats.com/best-spiritual-health-dying/) - Best health includes physical, mental, and spiritual health. Mike found his best spiritual health over the last year of his life, as he died.
- [Manage the Stress You Can](https://health-hats.com/manage-the-stress-you-can/) - Take care of the basics first to manage grief. There’s stress you can manage and stress you can’t. Stress of grief hard to manage. There it is. It’s not going away.
- [Trailer: Health Hats, the Podcast](https://health-hats.com/trailer_hhp000_20181128/) - I invite people to muse with me about life, death, advocacy, research, data, healthcare delivery, anything. Let's make some sense of all this Tower of Babel!
- [You 2.0 - Branding](https://health-hats.com/you-2-0-branding/) - Opa, what do you do? I'm a patient activist. What's an activist? An activist is someone who advocates for social change. What's an advocate? An advocate is a champion. When I write, speak, and talk with people about health, I'm advocating. What's social change? Social change is a better life for people. I think people
- [Activated patient, nurse, with engaged doctors. Can't reliably manage meds?!](https://health-hats.com/medication-list/) - My medication lists don't match and none of them reflect what I actually take. I have received doctor visit print-outs and seen on-line summaries in five doctor offices and two infusion centers in the past year. Each place does some sort of reconciliation at each visit. In one, a medical technician asks me what I'm
- [It's not so simple - making treatment choices](https://health-hats.com/its-not-so-simple-making-treatment-choices/) - We (patients and clinicians) need all the help we can get making informed health care decisions. We need the right information to the right person, in the right format, through the right channel, at the right time in our life flow and workflow - The five rights. Let's take managing acute pain as an example.
- [Passover](https://health-hats.com/passover/) - My pathological optimism is under assault. How do I live with myself as a privileged white man? How do I continue my advocacy as a patient activist? This week I listened to Terry Gross speak with Maya Dusenbery on Fresh Air about her book, Doing Harm, The Truth About How Bad Medicine and Lazy Science
- [Lessons Learned as a Patient-Caregiver Activist](https://health-hats.com/lessons-learned-as-a-patient-caregiver-activist/) - Photo by Monica Melton on Unsplash Patient-caregiver activism spans my 40+ year career and my many hats. As the first male public health nurse in Western Massachusetts in 1976, I established a walking route in inner-city Holyoke with the Holyoke Visiting Nurses Association. I strove to immerse myself in the community of people I supported. This more profound
- [WHAT RESEMBLES THE GRAVE BUT ISN’T](https://health-hats.com/what-resembles-the-grave-but-isnt/) - Photo by Lily Lvnatikk on Unsplash Apologies for the duplicate post. I changed hosts and lost this post in the migration. My friend and story-teller, Susan Spivack, sent me this poem. Really spoke to me. I may be pathologically optimistic and live in a comforting, safe, privileged bubble, but I allow myself moments of despair, feeling sorry for
- [Failure is Under-Rated](https://health-hats.com/failure-is-under-rated/) - We can all relate to failure. It's the warp of our lives. Failure, persistence, and humor are cronies. That‘s life, health, music - anything worth doing well. Persist and laugh. Eventually, who knows?
- [Appreciating Empowerment](https://health-hats.com/appreciating-empowerment/) - With empowered decision-making, the actual decision doesn't matter. The physical, mental & spiritual benefits may be tough to measure because we don't or don't know how to measure it? Still, we should practice it, appreciate it's wonder, and learn to measure it.
- [A Seat at the Table. Now What?](https://health-hats.com/a-seat-at-the-table-now-what/) - People at the center of care need to sit at the tables of governance, design, operations, and learning in all aspects of healthcare research, delivery, and policy making. Build trust. Play the long game even if you’re a short-timer.
- [Paying for Value. I'm Overwhelmed.  Please Read This](https://health-hats.com/paying-for-value-im-overwhelmed-please-read-this/) - If CMS pays for value rather than volume, how will value be measured? How will measures be tested? Read these interim recommendations. It helps when you understand this too. Even a little bit. Please ask questions, comment, and share.
- [Pride Falls](https://health-hats.com/pride-falls/) - I've been falling more. My stamina has decreased. I bought a foldable electric wheelchair. I feel like a charlatan. I can walk. Think of the wheelchair as an extender, not a crutch. Pride recedes, Europe on the horizon.
- [You say you want a revolution](https://health-hats.com/you-say-you-want-a-revolution/) - A Patient Revolution? I'm happy to follow revolutionary leaders who are charismatic, kind, caring, and persistent. I can be a thought leader, a writer, and a solid team member. So, I am not the revolutionary. Viva la revolution!
- [I'm Gonna Quit](https://health-hats.com/im-gonna-quit/) - I'm ready to quit playing my horn. I'm usually really good at what I do. Not so much playing the horn. Wait, I play for a reason. It's one of two outcomes I track with my doctors (falling and playing the saxophone). OK, I won't
- [Give Me My DaM Data::Open Source](https://health-hats.com/give-me-my-dam-dataopen-source/) - Medical care is already Open Source. ePatient communities are inherently Open Source. Open source technology for Give Me My DaM Data is a natural fit.
- [Help Me Be Patient-Centered](https://health-hats.com/help-me-be-patient-centered/) - Being patient-centered means taking care of and standing up for myself. I communicate my preferences, needs, and values. I'm responsible for respecting myself.
- [The Culture of Participatory Research](https://health-hats.com/the-culture-of-participatory-research/) - Participatory Research - patients as investigators, advisors, consultants, recruiters, and disseminators
- [May I Have Some - Time? Please](https://health-hats.com/may-i-have-some-time-please/) - Best Health depends on relationships. Relationships take time. We don't pay for the time. How can we improve the design of the visit flow and the electronics to make the time more valuable?
- [2+2=what?](https://health-hats.com/22what/) - The person-clinician relationship feeds a 2way loop of data, stories, and action. The art is to help me find, share, and interpret data about me and about groups of people like me
- [Helping Hands Everywhere](https://health-hats.com/helping-hands-everywhere/) - Challenges of accessibility in a motorized wheelchair. Potholes, doors, and helping hands.
- [Patient Ownership of Data?](https://health-hats.com/patient-ownership-of-data/) - What is owning my health data? Like owning property or a civil right? What should data do for me? Is there a model for us? Reporting on @theNAMedicine initiative and more.
- [Dragging or Walking?](https://health-hats.com/dragging-or-walking/) - In its simplest form communication is who, what and how. Who needs to communicate? What do they need to communicate? How will they communicate? Our healthcare depends on communication between all members of the health team. That communication exists in relationships. What do people at the center of care and professionals in healthcare look for in their relationships? Much as with any relationship
- [CMS Quality Measures for People](https://health-hats.com/cms-quality-measures-people/) - Payment for medical services is shifting from paying for volume (more visits, tests, visits, days = more money) to paying for value (quality of care). Makes sense. But what does value and quality of care mean? It means that physicians get paid an incentive (more money) for certain results (outcomes, process, actions). An example is
- [Reauthorize PCORI. We Need It!](https://health-hats.com/reauthorize-pcori/) - I care about what works for people on their health journey. How do lay people make choices for themselves in partnership with their clinician partners? So much affects our health choices, not just our medical decisions, but our behavior, our communities, the environment and the systems we use to survive and live well. I'm very
- [From the Inside Looking Out](https://health-hats.com/from-the-inside-looking-out/) - At the #PCORI2017 Annual Meeting, Alan Alda showed us a simple mirror improv exercise (remember Groucho and Chico Marx in Duck Soup?). Alan first showed us him mirroring an audience member, then the audience member mirroring him, and finally, them mirroring each other at the same time. It was an exercise in empathy. Afterwards, someone
- [Caregivers Rule: National Caregiving Conference](https://health-hats.com/caregivers-rule-national-caregiving-conference/) - I just got home from the 2nd Annual National Caregiving Conference in Chicago convened and hosted by Denise Brown and NationalCaregiving.com. You know the drill - most health care anywhere in the world is provided by family caregivers and parents. The attendees, mostly active or recent caregivers, networked over their shared lived experience. Presentations about
- [Receiving with Reckless Abandon](https://health-hats.com/receiving-reckless-abandon/) - My boy, Mike, died 15 years ago today (sigh). Here's a link to a video of an interview with Mike 4 months before he died. (11 minutes). This anniversary and attending the National Caregiving Conference last week made me think about being a caree, someone who is being cared for. My grandmother, my mother, and Mike
- [Blessings. Giving Thanks.](https://health-hats.com/blessings-giving-thanks/) - Grateful for our blessed life together. Grateful for our home with the footstep rhythm of family upstairs. Grateful that our means are enough to live within. Grateful for the ability to do good work. With so much suffering in the world, grateful for those working to make our lives and others' lives better. We share
- [CEO of My Health Team](https://health-hats.com/ceo-health-team/) - I am the CEO (Chief Executive Officer, the boss) of my health team with a ton of subcontractors: my primary care doc and her practice, my neurologist and his practice, the radiology department at my local hospital, the neighborhood pharmacy, the utility companies… You get the idea. They get paid through my employment benefits, your
- [A Vision of Paying for Value](https://health-hats.com/vision_of_value/) - I’m the child, Custodian and Healthcare Proxy of my 89-year-old mother, Alice. I live in a different state. My mother has diabetes and is depressed. Her care team, beside herself and me, includes medical providers in various health settings, community support agencies, and a full-time caregiver that helps her schedule and get to health-related services.
- [Paying Patient Experts](https://health-hats.com/paying-patient-experts/) - You've heard the Chief xxx Officer saying, I don't need to listen to patient experts, we're all patients. Gee, what do you say to this inexperience? You've also heard the empathy and born-again drive of the Chief xxx Officer who has a chronic illness, was recently hospitalized, or is the caregiver of a family member
- [Communication at Transitions](https://health-hats.com/communication-at-transitions/) - The Journal of Participatory Medicine recently published an article I authored, Communication at Transitions: One Audacious Bite at a Time. During my 40+ years as a nurse, 30+ years as a caregiver, and many years with a chronic illness, I can think of nothing more common than transitions: hand-offs between team members occur many times
- [A Fish Out of Water](https://health-hats.com/a-fish-out-of-water/) - When I went to an inner city Nursing School in 1975, I was a 19-year old hippie white boy from the suburbs in a class of 150 mostly mid-aged African American women (one other guy). I felt like a fish out of water. When you're admitted to the hospital you're wearing a johnnie, pushing a
- [#WordsDoMatter for Action](https://health-hats.com/wordsdomatter/) - Language has a magical influence on the lives we lead, with an impact on our thoughts, emotions, and/or actions. The words we use are one of the most potent ingredients in the science of language. Words have the power to heal, guide and motivate. They can confuse, mislead, and even hurt us. The intent of
- [Eureka! Triggers and Signals](https://health-hats.com/eureka/) - When Liz found herself unwilling to floss, she knew that major depression was soon to follow. She's going to need help. She tells someone who knows how to help her before she loses the will to take any action. When I start to get dizzy, I know my MS symptoms will soon get worse. Drinking
- [Health Hats: Reflecting on 2017](https://health-hats.com/health-hats-2017-annual-report/) - Since I stopped being an employee or a boss two years ago I've written annual reports for myself. I had written ones for my boss and staff for 25 years straight. I thought I'd keep it up now that I'm retired from that. Helps me be sure that my work serves my mission. With so
- [People with Chronic Illness Get Sick Too](https://health-hats.com/people-with-chronic-illness-get-sick-too/) - When I watch the camera scan a crowd (sports event, political rally) or I'm on the T (subway) I pick someone out and wonder, What's their backstories? Where do they live? Do they like being where they are right now? What ailments do they suffer from? Are they chronically ill? I'm either curious or nosey,
- [Imagine](https://health-hats.com/imagine/) - Clinician Imagine sitting down with your patient and care partner to find them prepared to choose a treatment that works for them. Imagine that they know their life priorities and their life challenges and can and will communicate them to you. Imagine that you have a key to the Tower of Babel and can communicate
- [Reading the Room and Yourself](https://health-hats.com/reading-the-room-and-yourself/) - Sometimes I feel like I'm part of someone else's play. Just dropped in. I don't know my lines, I don't know the other characters. I think I'm in a drama, yet it feels like a farce. The stage is ever changing. Have you seen those round, rotating stages where the props keep changing? I think
- [Trust](https://health-hats.com/trust/) - I trust my primary care doc. I trust my neurologist. I trust my instincts. I trust my gut. I do. I trust my wife. She trusts me. That certainly doesn't mean that we don't question almost everything each other says. Trust is not blind faith. Trust is NOT no second opinions. Trust is for when
- [Queen for a Day](https://health-hats.com/queen-for-a-day/) - If I was queen for a day, with a genie, and a clean slate… The practice management staff of XYZ clinic routinely runs a program of all their patients' data to predict those at risk for needing urgent care or hospitalization. The practice contacts Alice (one of many such patients or caregivers) pointing them
- [Taking a Risk](https://health-hats.com/taking-a-risk/) - OMG, I'm upgrading my website. I started the blog almost 5 years ago setting up the website with help from my friends Eric and Jodi (this is my 305th post). Now I want more from the website. I'm adding two pages: Portfolio to share my articles, guest posts, interviews, and projects. How Can I Help
- [Bad experience? Now what?](https://health-hats.com/bad-experience-now-what/) - I read a post this week on the Society of Participatory Medicine's blog about a nightmare attempt to obtain medical appointments as new patients. You've faced the poor listening skills, conflicting information about the availability of appointments, lack of sharing information about you within the clinic or insurance company, poor or no follow-up, waiting, waiting,
- [E-Patients, experts with lived experience](https://health-hats.com/e-patients-experts-with-lived-experience/) - This week I connected a patient with expertise in billing with a patient at the tail end of chemo struggling with huge unexpected bills. I introduced a cancer survivor with web design skills to a patient advocate setting up a new blog. I'm struck by the breadth and depth of professional skills I encounter as
- [100th Birthday](https://health-hats.com/100th-birthday/) - We celebrated a 100th birthday around my Aunt Kikke, born during WWI in the Netherlands. She interrupted medical school and then emigrated to the US when the Nazi's invaded. She couldn't get into medical school here because she was a refugee, a woman, and a Jew. She was finally accepted to Johns Hopkins Medical School
- [$35 or $30,000 (I think) for a lifesaving drug](https://health-hats.com/35-30000-think-lifesaving-drug/) - Who benefits from the murkiness of finding the prices of prescription drugs? Clearly not patients and caregivers. Today, I'm taking two potentially lifesaving drugs - azithromycin and rituximab. According to GoodRx.com, azithromycin, prescribed for my pneumonia, has a cash price of $35 with a $10 copay cost to me. Took me 10 seconds to find
- [What Keeps You Up at Night?](https://health-hats.com/what-keeps-you-up-at-night/) - I'm not a complainer or worrier-at least not often or for long. Comparatively, I have little to complain or worry about. Yet, this week I struggle with pneumonia, try to regain strength, not hurt myself coughing and not being a jerk or a burden. I'm also turning 65 and enrolling in Medicare. I keep dwelling
- [Penny Whistle for Father](https://health-hats.com/penny-whistle-for-father/) - Who knew he loved penny whistles? The pianist who accompanied his cello-playing friend on piano for years told a story yesterday at his funeral. At Christmas last year, this father who I knew as awkward, serious, unemotional, religious, conservative, classical music-loving, got the church choir penny whistles and led them in a performance of Good
- [Celebrating Connection, Respect, and Help](https://health-hats.com/2415-2/) - I crave connection and respect. Not crave as a thirsty man crawling toward a mirage of water in the desert or a person constantly begging others to fill an overwhelming desire that can never be filled. Rather a need that sustains me and renews me. Connection and respect fuel my inner fire so I can
- [The Personal Health Journey](https://health-hats.com/personal-health-journey/) - The metaphor, Personal Health Journey, works for me. We're heading somewhere for health whether on purpose or not. We're never actually there. It's continual - until it isn't. Sometimes we have a map, sometimes we don't. Map or not, we're still heading somewhere: work, the grocery store, our in-laws, the beach. There's always decisions to
- [Personal Health Goals Revisited](https://health-hats.com/personal-health-goals-revisited/) - I'm celebrating that I've finally learned an effective stretch for my hamstrings. Thigh and calf Charley horses and foot cramps have disrupted my days. My low back's been hurting for several months caused by this tightening and cramping of my quads, hamstrings, calves, and feet. It's become hard to sit for more than 15 minutes.
- [Making a difference as circumstances change](https://health-hats.com/making-difference-circumstances-change/) - I love hearing, That's a great idea! I'll try it. I'm delighted when I say it. This week my chiropractor said, You need more hydration, try drinking one more glass of water this week, and two more next week. I'm tickled when I counsel someone and they say Great idea, I'll try it, as happened
- [Byzantine Access to My Health Data Serves Whom? Not Me](https://health-hats.com/byzantine-access-health-data-serves-not/) - I have secondary progressive multiple sclerosis. Today, I have a primary care physician in one health system, and four specialists in three other health systems (each has unique ownership, medical record, and patient portal). I use two retail pharmacies, one specialty pharmacy, and three lab services. I also see an acupuncturist, chiropractor, physical therapist, and
- [Health Team Relationships](https://health-hats.com/health-team-relationships/) - My primary care doc's medical technician came in to take my vital signs, "I'm Frank. I'm new to Dr. Z's team." "Hi, I'm Danny," I replied. "Dr. Z's on my health team. Welcome to the team." Big smile from Frank, "Hmm, I never heard that one before." My PCP and neurologist get a kick out of me
- [Plan of Care - So Many Questions](https://health-hats.com/plan-care-many-questions/) - I am on a health journey, trying to meet my health goals with the support of a care team. Who's doing what? When are they doing it? That's my plan of care for me. Most people don't normally think in terms of a plan of care for themselves. Let's peek into their minds: Plan of Care
- [Learning What Works](https://health-hats.com/learning-what-works/) - One of my passions in life is Learning What Works for people on their health journey. As we travel, we make choices - endless choices. Should I do A rather than B? Eat the brownie or don't eat the brownie? Take a walk or don't? Go to the doctor or wait until I feel worse?
- [I am Not My Condition](https://health-hats.com/i-am-not-my-condition/) - I'm Disabled. Who labels themselves? Feels like crap. I applied for disability. Needed a psychological evaluation. Spent an hour with a psychologist. I spent that hour telling her about the effect MS has had on my life. MS is seriously annoying…. Came out feeling terrible. "Oh man, I'm disabled. My life has been so disrupted.
- [Health Goals to Clinical Decisions (CDS)](https://health-hats.com/goals_to_decisions/) - It's hard to reach personal health goals or solve medical problems without a plan. Plans require decisions. Never-ending decisions (choices) in the health journey. Clinicians, researchers, and insurance companies study and use Clinical Decision Support (CDS) to help with the decision-making process. It's a shortcut for using research (evidence) in the decision-making. Some talk about
- [Adjusting Your Personal Health Plan? Right…](https://health-hats.com/adjusting-personal-health-plan-right/) - My mother bought me a beautiful handmade brocade vest when I lost 45 pounds. It's my favorite. I can't button it now. Not even close. I haven't worn it in several years. My personal health goal: Lose weight and keep it off. It may be the most common American health goal. American's spent about $60
- [Help Making Choices](https://health-hats.com/help_making_choices/) - Let's continue the conversation about making choices along our health journey. I call this choice-making informed decision-making. Some call it shared decision-making, others call it clinical decision-making. Common to all three labels is that decisions are made based upon evidence (research) when evidence is available. Remember that evidence says that under specific circumstances for certain
- [Health Hats - 2016 in Review](https://health-hats.com/health-hats-2016-in-review/) - I've been feeling my oats in 2016 as an advocate and catalyst for Empowering people as they travel together toward best health. As my dear friend, Mary Sue said, Danny, you've found your calling! Wearing my many hats, I often feel like I know enough to be dangerous about much of healthcare. When I walk
- [Michelle, We Miss You Already](https://health-hats.com/michelle-we-miss-you-already/) - I suffered through the inauguration. Michelle Obama looked heartbroken. I'm heartbroken. Rather than feel hopeless or angry or terrified, I'm appreciating every act of patriotism I see each day. Patriotism is making your country stronger, making your community stronger. What makes our communities stronger? Clean air and water, public safety, accessible and affordable healthcare, educated
- [Interview: Danny on Urgent Care Radio](https://health-hats.com/interview-danny-on-urgent-care-radio-show/) - As many of you already know, on January 7, 2017, Minda Wilson interviewed me on the URGENT CARE radio show. Here's a link to the episode. I recommend the show, URGENT CARE. Many good interviews of caregivers, patients, clinicians, and policy experts. Minda, a health care attorney, knows her stuff. URGENT CARE is one of many shows on Radioactive Broadcasting. Let
- [Thoughts on FATIgue](https://health-hats.com/thoughts-on-fatigue/) - Exploit the relative dry spots in the wet blanket of fatigue. Sadness and fatigue are kissing cousins. So are chronic illness and fatigue. Close your eyes, give in to fatigue. When fatigued, turn off the news. Passion finds and expands the cracks in fatigue. Bone-tired fatigue? Take 2 deep breaths. Move something, anything. Belly laughs
- [Personal Health Goals](https://health-hats.com/personal-health-goals/) - As a person with MS, I've written that my personal health goals are to progress as slowly as possible and do nothing that will mess with my pathological optimism. People I talk with about personal health goals say it's not easy to come up with personal goals. What do I mean? OK, people who
- [Belonging](https://health-hats.com/belonging/) - “Home is a notion that only nations of the homeless fully appreciate and only the uprooted comprehend.” ― Wallace Stegner, Angle of Repose “I rest in ease, knowing there are others out there, whispering themselves to sleep, just like me.” ― Charlotte Eriksson I am the son of Holocaust survivors. My mother was a German Jew, a refugee in Netherlands
- [Tales of Woe](https://health-hats.com/tales-of-woe/) - From my memorable quotes pile: Harried caregiver: What are we supposed to do next? Instructions from doctors, just getting through the day, plus dealing with bureaucracy? My word, I'm so overwhelmed. Everybody thinks their thing is the most important. Can't this be easier for my wife and me? Recently diagnosed patient: I feel like crap.
- [Should I or Shouldn't I? Managing Uncertainty](https://health-hats.com/should-i-or-shouldnt-i-managing-uncertainty/) - Have you ever remodeled your kitchen? So many decisions: Cabinet style, drawers, finish, hardware, not to mention the floor and appliances. There's you, your partner, a contractor, a cabinet person, a floor person, the appliance merchant. Decision after decision - should we or shouldn't we? And nobody's gonna die or get injured - hopefully. All
- [Community Rocks](https://health-hats.com/community-rocks/) - I'm preparing to attend a California Compassionate Care Coalition palliative care conference #cccc17 in a week. I'm reminded of the power of community in advancing good health practices. I have two stories. The first is about the ongoing public health collaboration since 1993 in LaCrosse, WI to meet and sustain very high rates of advanced care
- [Need a recharge? Listen for what works.](https://health-hats.com/need-a-recharge-listen-for-what-works/) - I feel awash with stories (nightmares even) of disastrous, frustrating relationships between people and their professional care teams. I listen with amazement and watch the hurt, the anger, the self-blame, bubble out, spew forth. Sometimes I have to sit sideways to protect my heart from breaking. At their best, relationships are partnerships. Partnerships can
- [Coalition for Compassionate Care of California](https://health-hats.com/coalition-for-compassionate-care-of-california/) - I attended the Coalition for Compassionate Care of California Conference (#CCCC17) in Sacramento this week as an ePatient Scholar. Exhilarating, informative, warm, curious, inspiring, and tiring. I hoped to leave with one novel (for me) insight into palliative care; hear patient, caregiver, and clinician stories about their experiences; to hear how clinicians receive education about
- [Service Agreements for Me and My Health Team](https://health-hats.com/service-agreements-for-me-and-my-health-team/) - I wrote a blog post a couple of weeks ago for the Society of Participatory Medicine about Service Agreements Among Friends and Colleagues. My point was that service agreements set boundaries, which can be especially important for someone who’s managing a chronic condition. I shared my post with my colleagues at Involution Studios while we discussed the
- [Misdiagnosis - How can Patients Help Doctors?](https://health-hats.com/misdiagnosis-how-can-patients-help-doctors/) - The Washington Post reported this week about a study done at the Mayo Clinic where 20% of patients seeking second opinions were completely misdiagnosed, 12% received a correct diagnosis, and the rest (67%) got partially correct diagnoses. Also this week I heard from readers about their experiences with primary care practitioners reluctant to refer them
- [Resist, Fund Me, Change, Join, Decide, Click, Lead](https://health-hats.com/resist-fund-me-change-join-decide-click-lead/) - The pervasive drumbeat of Calls for Action in healthcare overwhelms me, excite me, bewilder me. I'm wired for action. I have to listen and consider or shut it out. I have no middle ground. There's a limited amount of gas in my tank. I feel protective of my retirement dollars. And I still need
- [March Madness - TrumpCare](https://health-hats.com/march-madness-trumpcare/) - I'm not following March Madness this year for the first time since we bought a TV in 1985. We ended cable this year (that's another health story for later). Rather, I followed the suspense of the failed enactment of RyanCare and TrumpCare. I silently cheered at my seat in DC while reviewing PCORI Palliative Care
- [Stories, Scenarios of Care](https://health-hats.com/stories-scenarios-of-care/) - Screenwriting seems like such an opportunity. The storyteller imagines a dilemma, a journey, a cast of characters, and a community. They picture what will happen and presto - a play, a movie, a video. Everyday people have a health dilemma, find themselves on a journey, with a cast of characters, in a community - real
- [The Golden Rule?](https://health-hats.com/golden-rule/) - Pissed off only begins to describe my reaction to the passage of WealthCare, TrumpCare, RyanCare. How about outraged, furious, despondent, bewildered. My frame has always been: Everyone has a right to basic health care. How can we align the forces of this great and diverse country for best health for all? How have we so
- [Calling All Advocates - Health Hats Interview](https://health-hats.com/calling-all-advocates-health-hats-interview/) - You know I love stories, telling and listening. Especially stories of people on a rough health road who take the fork to advocacy and community organizing. Advocacy and community organizing isn't for the faint-hearted. It's a tough business. Passion and lived experience are necessary, but not sufficient. Advocacy is a struggle. We need lessons learned
- [Precision Prism](https://health-hats.com/precision-prism/) - I’m the son, Custodian, and Healthcare Proxy of my 89-year-old mother, Alice. I live in a different state. My mother has diabetes and is depressed. Her care team, besides herself and me, includes medical providers in various health settings, community support agencies, and a full-time caregiver that helps her schedule and get to health-related services.
- [Cinderblocks4 - Medical Advocacy at its Best](https://health-hats.com/cinderblocks4-medical-advocacy-at-its-best/) - Pound for pound, the best health conference! A rare combination of small, local, action-oriented, inspiring networking, and relaxing. 40-50 attendees met in Grantsville, Garrett County, MD, population 766, for three days. Regina Holliday of Walking Gallery fame organizes and breathes life into Cinderblocks. The older I get, the more I seek people who collaborate
- [Life literacy - If you can't explain it to a six year old…](https://health-hats.com/life_literacy/) - I play baritone saxophone in community Latin and blues funk bands. Our professional musician leader teaches us the language of music theory - this week it's Minor Dorian and Lydian scales. As an amateur, I understand about a third of what he's talking about. Still better than a quarter understood six months ago. In Washington
- [Community/Technology Partnerships @ Health 2.0](https://health-hats.com/communitytechnology-partnerships-health-2-0/) - I'm a technology nerd and early adopter while also a profound technology skeptic. My heart sings when communities of people solve problems that matter to them and theirs and then look for technology partners to automate and share their solutions. By community, I mean partnerships of people at the center of care (people, care partners,
- [Pocket Therapy for #Caregivers](https://health-hats.com/pocket-therapy-for-caregivers/) - My mom insisted on end-of-life care at home. At the same time she worried about being a burden to her family. A few weeks before she died, when she once more lamented being a burden, I said, Mom you are a burden, get over it. We did. Thankfully, she laughed and accept it. Her husband
- [An Experiment of One](https://health-hats.com/an-experiment-of-one/) - I was discharged after bypass surgery with 26 pages of instructions. I was just concerned about getting home. My dad lives alone on the other coast. He takes 11 medications from 4 different providers. At least one gives him a blood thinner. What do I do if he bleeds? I can get my acupuncturist and
- [Health Planning Over a Lifetime](https://health-hats.com/health-planning-over-a-lifetime/) - Three weeks ago I wrote about navigating our experiment of one. This navigation is health planning over a lifetime. Health Planning over a Lifetime includes having destinations or goals and deciding what needs to happen to get there. Who's going to do what, by when? How will we recognize when we've arrived. It helps to
- [Standard Health Record](https://health-hats.com/standard-health-record/) - I'm on vacation this week. A Blues Cruise. Heard two bands with bari saxes already - Los Lobos and Selwin Birchwood. Today, I'll try to join the Pro-Amateur JAM. So just a quick post: Last week I was invited to the @MITRE Corporation by @HarrySleeper and met teams working on: Standard Health Record, an open
- [I Wasn't Born with a Tattoo, Telling Me How Long I Have to Live](https://health-hats.com/i-wasnt-born-with-a-tattoo-telling-me-how-long-i-had-to-live/) - 10p New Year's night 2002: Mike called me. I'm numb on my right side. My heart screamed. My boy had a stage 4 melanoma removed from his neck a year ago followed by lymph node removal and a course of Interferon. Go to the Emergency Department. The next day a metastasized brain tumor the size
- [Stranger in a Strange Land](https://health-hats.com/stranger-in-a-strange-land/) - OMG, where's my wife? I need to be rescued. I can't do this. I can't be here. My pounding heart, my rapid, shallow breathing. I can't be here. Where's my Ativan?! Have I gotten bad news, a diagnosis, felt a lump? Am I bleeding? Have I fallen? Am I a stranger in the strange land
- [What Works? Outside the Box](https://health-hats.com/what-works-outside-the-box/) - I'm committed to and invested in evidence-based health and wellness. I get my flu shots, exercise every day, and take my cholesterol meds. I check out studies so I'm informed when I make decisions with my neurologist. I am committed to patient-centered research. This week I was intrigued by a conversation in Washington @PCORI (Patient
- [Superpower: Opening our hearts](https://health-hats.com/superpower-opening-our-hearts/) - I'm scared but not shocked. The level of disappointment so many people feel about their lives profoundly saddens me. I should have more. I would have more if it weren't for others - all sorts of others. Feelings of injustice can power so much. I don't pretend to understand all the righteousness, anger, and meanness
- [Health, Wellness, and Medical Decision Support, Wherever and with Whomever](https://health-hats.com/health-wellness-and-medical-decision-support-wherever-and-with-whomever/) - When diagnosed with multiple sclerosis, I did little research. Here I was, a card carrying member of the research industrial complex heavily involved with the Patient-Centered Outcomes Research Institute (PCORI). I just couldn't bring myself to Google MS. I relied on my wife to do the research and inform me. I told my neurologist I
- [Giving Thanks](https://health-hats.com/giving-tanks/) - I'm thankful for the superpower that I shared with my mother, Ruth, and son, Mike - accepting what is. I'm thankful that I was born a white straight male to a closeted gay dad, Ruben, and a Holocaust survivor, Ruth - I appreciate that I have first world problems and learned from them that I
- [Once Again - Stranger in a Strange Land](https://health-hats.com/once-again-stranger-in-a-strange-land/) - I spoke with a friend this week who felt like a stranger in a strange land. She's recently moved to a community with almost no experience with Muslims, people from West Africa, or with those with chronic pain from a genetic disease. Every encounter presents challenges drawing on her charisma, empathy, dignity and ability to
- [#CarePlanning - a Mission From God](https://health-hats.com/careplanning-a-mission-from-god/) - My wife and I built a house together - the whole house, everything except drilling the well. While building, living and improving it over 5-6 years, we had a running argument about paneling. She hated it and I loved it. It took us several years to figure out that she hated 4x8 sheets of paneling
- [Person-Centered #CarePlanning - What Data?](https://health-hats.com/person-centered-careplanning-what-data/) - More about person-centered #CarePlanning. (If you missed my first post go here) Our health teams struggle to communicate at transitions (between team members, when adding a new team member, between people, offices, and settings) – it’s a perfect tower of Babel. In its simplest form communication is who, what and how. Who needs to communicate? What do they need
- [Decisions, Decisions, Decisions](https://health-hats.com/decisions-decisions-decisions/) - Decisions, decisions, decisions. We face endless numbers of decisions during our health journeys. From the mundane, should I fast to lose weight? To the tedious, what statin should I take? To the heartbreak, should we do everything possible? Yesterday, after playing music, someone told us that he fasted to lose 20 pounds. How many weight
- [Recommit for the New Year](https://health-hats.com/recommit-for-the-new-year/) - At year-end, I'm still on a mission to Empower people as they travel together toward best health. (Patients, caregivers, clinicians, direct care and support staff, communities) To understand and support each other To balance workload and capacity To achieve the best outcomes To communicate effectively during transitions of care To learn and share what works These days
- [Re-calibrating - Finding Balance](https://health-hats.com/re-calibrating-finding-balance/) - So, I have new MS lesions. I'm weaker, less stamina. A 3-days of IV SoluMedrol (steroids) infusion knocked me out. I'm recovering. What will my new normal be? Once again, I'm grateful for my health team. It reconfirms for me that executing a continuing plan of care for self, health team self-care, and building a
- [Three Words for the Year](https://health-hats.com/three-words-for-the-year/) - CareGiving.com is sponsoring Note to Ourselves For 2016 and Three Words for 2017. My Note to Myself: Continue to do what I'm doing. Appreciate the small stuff (fresh running water, regular garbage pickup). Appreciate living within our means. Appreciate the warm rocks of my honey and my family. Appreciate my empathetic and skilled health team.
- [4-5 Hours a Week & $0 to Invest](https://health-hats.com/4_to_5hrs_to_invest/) - When you have 4 to 5 hours a week and $0 to invest, how do you move something an inch that needs to move 100 miles? I'm talking about the unhealthy mess of our US healthcare system. Most would agree that it's a long complicated journey to health for our system. As clinicians, caregivers, or
- [I'm So Discouraged](https://health-hats.com/im-so-discouraged/) - Several times this week I heard a variation on: I'm so discouraged, I thought I was doing better. I just keep sliding back. I really suck at this. The topics: meditating every day, losing weight, managing anxiety, soloing, recovering from surgery. I heard each from more than one person. Several people said it about multiple
- [Clinical Practice Guidelines - Oh My Aching Brain](https://health-hats.com/clinical-practice-guidelines-oh-my-aching-brain/) - Last time I saw my Primary Care Provider I asked if I needed to keep taking my Crestor, a drug to reduce cholesterol. She pulled out the clinical practice guideline for the treatment of blood cholesterol released by the American College of Cardiology and the American Heart Association. Every couple of years I ask her
- [A Roller Coaster of Love](https://health-hats.com/a-roller-coaster-of-love/) - 225 weekly blog posts. How do I do it?, a reader recently asked me. The health journey provides me endless material: fascination, intrigue, tragedy, empathy, frustration, wonder, curiosity, fear, and inspiration. As a nurse I'm blessed to participate in some of people's most intimate moments as a guide, helper, ear, hand holder, and translator. As a
- [Scared?](https://health-hats.com/scared/) - My friend, Phyllis, in Cleveland suggested I might be asking the wrong question: "What works for me when I'm scared and what doesn't?" You may recall that readers who have been patients and caregivers have been adamant that this is a key piece of information that should be in the electronic health record, especially needed
- [Fractured Communication in Crises](https://health-hats.com/fractured-communication-in-crises/) - This week two of my readers described experiences of fractured communication with their clinicians. One reader, a person in acute treatment for overwhelming anxiety, found himself watching and feeling the effects of dueling clinicians with widely differing diagnoses, medication regimens, and styles of communication. A collaborative, listening, empathetic physician versus a paternalistic, blameful, arrogant physician.
- [Deconstructing the Tower of Babel](https://health-hats.com/deconstructing-the-tower-of-babel/) - I've spent the week immersed in this communication dilemma in healthcare. As I've said before, I'm amazed that any communication occurs in healthcare - a constant unfolding Tower of Babel. Way too big of a topic. Let's narrow (as the solar system is a narrowing of the universe) to communication across thresholds and boundaries. Some
- [Transitions - What you don't know can hurt you](https://health-hats.com/transitions-what-you-dont-know-can-hurt-you/) - Still exploring communication across transitions. This week speaking with clinicians. First, with case managers in an acute, short-term rehabilitation center serving people with recent strokes, heart conditions, or surgeries needing less than a month of intensive therapy. The transition points between nurses shift to shift, between physicians and between case managers, between patients, families, and
- [AACH: Communication and Relationships](https://health-hats.com/aach-communication-and-relationships/) - I attended the American Academy of Communication in Healthcare Conference in New Haven. The AACH is the professional home for all committed to improving communication and relationships in healthcare. About 200 people attended from US, Canada, Israel, Brazil, Belgium, Australia. Although most attendees were physicians, I met nurses, therapists, coaches, office managers, patients, sociologists, medical
- [Leadership - The Gift That Keeps on Giving](https://health-hats.com/leadership-the-gift-that-keeps-on-giving/) - I felt so empowered by the best boss ever, Jim Bulger, Executive Director of a managed care company. After I had been Director of Quality Management for 3 months, I told Jim that I didn't think we were moving along at the speed he wanted us to go. "What do you think we should do?"
- [Leading as Caregiver - It's Complicated](https://health-hats.com/leading-as-caregiver-its-complicated/) - Last week I wrote about Leadership, the Gift That Keeps on Giving. Several e-mails asked about the challenge of leading a health team in the role of caregiver. Great question! A challenge of leading in a sometimes hostile confederacy of people who don't even know they're on a team. Same dilemma as the person who's
- [Your Communities Need You!](https://health-hats.com/your-communities-need-you/) - Black Lives Matter! Disability Rights! Women's Right to Choose! Gimme My DaM Data! Calls to action. In the early 60's my parents were Fair Housing activists. They were the first whites in Illinois to adopt mixed race children and were the first whites in their all white neighborhood to sell their house to an African
- [Guests on People's Health Journeys](https://health-hats.com/guests-on-peoples-health-journeys/) - As I learn more about and am sought out more as an expert in patient engagement, empowerment, and activation, I struggle to respond to the health-system centric definitions given by people thinking they are patient-centric or want to become patient centric. Stuff like, 'How do we make patients feel like they were included in decision-making.
- [Alone](https://health-hats.com/alone/) - I first thought about care partners 20 some years ago when my oldest son invited me to spend a few hours with his team heading to Zimbabwe for development aid work. "Talk to us about health, Pop. What do we need to know?" I remember telling them "keep it zipped up" and "buddy up with
- [Harmonic Convergence](https://health-hats.com/harmonic-convergence/) - Consider the fabric of best health. The Quadruple Aim (Best patient and clinician experience, best population health, reduced cost) is that fabric. The weave of that fabric is information about our personal and collective health and health journeys. The warp is learning and continual improvement. Quadruple Aim: Improving the patient experience of care, improving the health
- [What Happens Next? Planning Care](https://health-hats.com/what-happens-next-planning-care/) - People: What's wrong with me? Should I tell the doctor? What does she want me to do? Can I afford it? Does it (will it) hurt? Can I (will I) still take care of my family (go to work, go out, have fun)? What happens next? How'm I doing now? Did it work? Did it
- [The Thorny Thicket of Feedback and Advice](https://health-hats.com/the-thorny-thicket-of-feedback-and-advice/) - When I was diagnosed with MS, people came out of the woodwork with advice and feedback. I was so not receptive. When I talked with my neurologist about the advice, he said, everything works for someone. The challenge is figuring out if it works for you. I have an executive coach who gives me feedback
- [Cuz I'm the Dad! That's Why](https://health-hats.com/cuz-im-the-dad-thats-why/) - I wish my partner would carry his load. How do I get my kid to clean his room? She never cooks! How do I get her to talk to me? People in relationships complain and scold - expecting the other person to change and do whatever. Makes me cranky. Relationships are a two-way street in
- [The Minnow Who Thought He was the Ocean](https://health-hats.com/the-minnow-who-thought-he-was-the-ocean/) - For anyone who wants to improve health across a population, whether locally, in a broader region or state, or even nationally.
- [Nowhere We Can't Get to in an Hour](https://health-hats.com/nowhere-in-an-hour/) - In our 30's we lived in West Virginia - very rural, back-to-the-land hippies, eight miles up a dirt road. We participated in many communities. Our intentional community of families shared 180 acres of land, helped each other build our houses, raised our kids together, home schooled, with some facsimile of farming - garden, bees, fruit
- [The Minute Before and the Minute After](https://health-hats.com/the-minute-before-and-the-minute-after/) - there's a minute before which you aren't married and the next minute you are. What's the difference?
- [Medical Residents and Safety](https://health-hats.com/medical-residents-and-safety/) - Listening to an article on Morning Edition this week, Is It Safe for Medical Residents to Work 30-Hour Shifts? A study has begun randomly putting some residents in 30 hour shifts and others in 16 hour shifts to see if there is a difference the proportion of patients who die within 30 days (can't believe
- [Last Post, New Year](https://health-hats.com/last-post-new-year/) - Last post of 2015. Reviewing the year in 51 blog posts, we discussed: Death and Dying Give Me My Dam Data Values Leadership Work/Life balance Grace Ignorance, Uncertainty, Research Music Caregivers Experience of People at the Center And more I'm looking forward to the adventure of the new year: Maintaining my health, contributing to the
- [Patient Reported Outcome Measures (PROM)](https://health-hats.com/patient-reported-outcome-measures-prom/) - When I first heard about Patient Reported Outcome Measures (PROM) I thought they were talking about pulse, blood pressure, weight, pain, anxiety. I didn't start exploring further until 2012 when I was on the federal government's Blue Button Initiative - clicking a button in your electronic medical record to download information from that record into
- [Better Clinician Experience, better #PtExp erience](https://health-hats.com/better-clinician-experience-better-ptexp-erience/) - I attended a meeting last week of Mass Health (Massachusetts Medicaid)'s Payment and Care Delivery Quality Improvement Work Group (a mouthful). The main topic: patient experience. Measuring #ptexp is critical and challenging. There's no best way to measure, and it's quite expensive. Who loves to fill out surveys? I do when I'm seriously delighted or
- [Presidential Candidates on #Healthcare?](https://health-hats.com/presidential-candidates-on-healthcare/) - How do I research presidential candidate views on healthcare? What if I google each candidate's web site? Donald Trump has a Positions page on reforming the VA Medical System. Much hyperbole, but he does say: Under a Trump Administration, all veterans eligible for VA health care can bring their veteran’s ID card to any doctor or care
- [#Innovation and #Mentoring](https://health-hats.com/innovation-and-mentoring/) - I'm attending an Entrepreneur's Think Tank at the local Career Center and the Tech Sandbox in MA's MetroWest region. I helped start something in 2012 called Pain Points in Healthcare Mini Unconference, now Healthcare Innovators. Each of these groups assembles people with bright ideas trying to set up a viable business. Often people with more
- [Learning from What Doesn't Work](https://health-hats.com/learning-from-what-doesnt-work/) - Notice how young kids learn to walk. Try, fail, try again, over and over until they get it right. On the other end of the continuum are politicians accusing each other of changing their minds. Dragging up statements from years ago to slap each other with a change in direction. When did they lose their
- [Secretary General of Your Health Team](https://health-hats.com/secretary-general-of-your-health-team/) - I want to be a good leader of my healthcare team. How would I know? Such a swirl of activity. This week my ophthalmologist wanted to refer to me another ophthalmologist. She said she'd email her to introduce me, send over my records, and have her scheduler arrange the appointment. I'll follow-up if I don't
- [#SDM - a floor, not a ceiling](https://health-hats.com/sdm-a-floor-not-a-ceiling/) - I am a patient, caregiver, and nurse - an advocate of shared decision-making (#SDM). My health team operates in a collaborative process that allows us to make health care decisions together, taking into account the best scientific evidence available, as well as my values and preferences. (See this site for more info.). Click here for
- [What's Pokeman Got to Do With It?](https://health-hats.com/whats-pokeman-got-to-do-with-it/) - Health literacy is a puzzle. Please take the time to translate and listen. The life saved could be your own.
- [Not collected? Not studied.](https://health-hats.com/1123-2/) - What do people consider to be clinical data, when they're not wearing the hat of clinician, academic, researcher, insurer or EHR vendor? We can all agree that pulse, weight, diagnosis, procedure, medication are all clinical data. But what about data that answers questions like: What does feeling worse (or better) look like? What works for me when
- [Life Happens or Expecting the Unexpected](https://health-hats.com/life-happens-or-expected-the-unexpected/) - The New York Times Magazine has an article this week about flexibility at work. Since I am a person with a chronic illness and disability and have been a boss to many teams, it seems like a no brainer to support flexibility at work. In fact, life requires flexibility at work. If you give care
- [Disabled. Looking for Work. Reference](https://health-hats.com/disabled-looking-for-work-reference/) - Here's the reference I didn't accept on LinkedIn: He's seriously annoyed with his disability, full of himself and his opinions and perceptions about life and health. Blogs every week whether or not he has anything to say. Can't keep a job. Has the attention span of a gnat, flitting from one thing to another. Needs
- [Changing habits - for people and payers](https://health-hats.com/changing-habits-for-people-and-payers/) - I love my health team. They help me stay tuned up with my chronic challenges and they get me through unexpected crises. Still, I see them way too often. 3-5 times a month and I've never been an inpatient. Professional contact is a drop in the pond of my health. The rest of the time
- [Alone, we can do so little. Together, we can do so much](https://health-hats.com/alone-we-can-do-so-little-together-we-can-do-so-much/) - I taught this week at the Organization of Nurse Leaders' Leadership Academy. My topic is Organizational Cultural - Change from Within. I love working with nurse leaders. Those who supervise the front line in healthcare have the most difficult job in healthcare be they nurses, therapists, doctors, support staff or other direct care workers. So
- [How many words for pain?](https://health-hats.com/how-many-words-for-pain/) - There are 46 words for snow in Iceland. How many are there for pain in English? Suffering, aching, torture, throbbing, discomfort, ache, sore, throb, sting, twinge, shooting, irritation, tenderness…
- [Engaged with Sax](https://health-hats.com/engaged-with-sax/) - Shopping for a new neurologist I had three screening questions: What's your response time to emails? Do you use OpenNotes? How would you work with my acupuncturist? The first doc said, 'I don't use email, we don't have a portal. What are OpenNotes? What do you mean you're shopping for a neurologist? You either want
- [A caregiver is [not] a caregiver, is [not] a caregiver](https://health-hats.com/a-caregiver-is-not-a-caregiver-is-not-a-caregiver/) - When my mother was dying I was a long distance caregiver. My mom made her own decisions, shared them with us, sought advice from me, asking me to research meds and treatments, wanted help with scheduling, wanted me to attend some of her appointments with her (mostly by phone) and gave me access to her
- [Experiences, experiments, reflection, action](https://health-hats.com/experiences-experiments-reflection-action/) - This week people told me stories about a moment in their health journey - Symptoms, people, relationships, procedures, thresholds, feelings. Completely fascinating, inspiring, and gut wrenching windows into life's challenges and tragedies. I heard, I'm worried, the surgery worked, I can't find a clinician who listens to me, my condition recurred - worse, my family's
- [Screen-Free Sabbath](https://health-hats.com/screen-free-sabbath/) - Week 3 of my wife and my Screen-Free Sabbath. Feels pretty good. After the first week it feels like a relief. I'm reading more books - paper and not Kindle. Turned off my e-mail and social media notifications. They were all still there at sundown Saturday. No emergencies. Sitting still more often - some alone,
- [Notifying me when accessing my health data](https://health-hats.com/notifying-me-when-accessing-my-health-data/) - Why don't I know when someone, something, anyone accesses my personal health data? I get emails from Apple, Google, my banks, credit cards, Facebook when someone attempts to get access to my financial or social media accounts from a different computer or browser than one I've authorized. My bank proactively let's me know when they suspect
- [Driving our health journey - writing the story](https://health-hats.com/driving-our-health-journey-writing-the-story/) - For individuals to drive their own health journey we must have the key to the ignition, be in control of the accelerator, the brakes, the steering wheel, and be able to see the full dashboard of cues about ourselves. At the same time we need to control access of passengers, be able to give the
- [Making a Difference?](https://health-hats.com/making-a-difference/) - On the phone with my friend and fellow-blogger, Cristin Lind, wondering if we are making a difference. In our many years of advocacy for person-centered health, has the dialed moved? We are change agents. How do we know if we've accomplished anything? How do we recognize change in an ocean? Can one person reducing climate change?
- [Nothing about me, Without me.](https://health-hats.com/nothing-about-me-without-me/) - More about the work of the group OpenID HEART (Health Relationship Trust) that I blogged about a couple of weeks ago. Health Relationship Trust: interesting name - people at the center trusting the relationships in their health journey. My blog tag line is: Discovering the magic levers that impact best health. My personal mission is: Increase the sense of balance
- [Push, push](https://health-hats.com/push-push/) - My wife waits to tell me about something she wants us to do or buy, because I'll just do it or buy it. Bam, bam. I'm a doer. Push, push. About 20 years ago I realized that the biggest stress for my teams was me. Push, push. My line is, let's develop our work plan
- [Embracing your friend, ignorance](https://health-hats.com/embracing-your-friend-ignorance/) - Pondering ignorance this week. Not so much the ignorance we see with politicians (although that can be quite awesome on a massive scale), but the not knowing. Discovering a realm of not knowing you didn't know existed. I've seen varied reactions: mild curiosity, questioning, enthusiastic digging and pulling, fear and whining. I participated in a
- [Finally, narratives at the end](https://health-hats.com/finally-narratives-at-the-end/) - Spread the rest of Mom's ashes with my Dad's in Grosse Pointe, MI, joined by some dear friends. He was her soul mate. They died 43 years apart. As she would have said, it was a great party. too bad I couldn't be there. My narrative about my mom is still quite fluid. Sometimes she's
- [Finite disappointment, infinite hope](https://health-hats.com/finite-disappointment-infinite-hope/) - “We must accept finite disappointment, but never lose infinite hope.”― Martin Luther King, Jr. Mutual disappointment can bring out our best selves or worst selves - disappointment in a lover, friend, colleague, hero, business associate, health team member. Underwhelmed by expected results -> disappointment. No disappointment without high hopes. Disappointment drains my immune system and fills my gut like
- [Belonging - a matter of perception](https://health-hats.com/belonging-a-matter-of-perception/) - During the inevitable ups and downs of life, I feel better when I belong. The pointy end of illness, loss, unintended change, stress, can be softened by belonging. Belonging to a family, team, community. What is this feeling of belonging? Being with family, comrades, teammates, cronies, neighbors. My wife and I are visiting old friends.
- [The jumble of research](https://health-hats.com/the-jumble-of-research/) - Next week, I'll be attending PCORI's (Patient Centered Outcomes Research Institute) Communication and Dissemination Advisory Team meeting in DC. Research is ink on paper until people at the center and clinicians receive the results in an understandable and useable form: communication, translation, dissemination. I speak with many of you about what matters to you. I hear
- [Gratitude](https://health-hats.com/gratitude/) - Silent gratitude isn't much use to anyone. ~ GB Stern It can be tough to feel gratitude in the face of adversity. Yet where does dignity and strength lie except with gratitude? Stress, adversity, pain, grief are not solid entities. Rather, they cast a heavy shadow on the variety of life. They demand attention, but
- [Adapting - Balance](https://health-hats.com/adapting-balance/) - When diagnosed 7 years ago with Multiple Sclerosis, my neurologist told me I'd had MS for 25 years. Why didn't I know it before? He said that I was a master at unconscious adapting - my nervous system and brain adapting, creating new pathways, and my creativity in finding alternate ways to do stuff. Adapting
- [Another threshold](https://health-hats.com/another-threshold/) - My long-time friend, Glen, died last week. The first thing Glen and I did together in Detroit, 1969 was to go into elevators and face the back to freak people out and then we got stoned. Glen helped my wife and I set the poles (trees) in the house we built in West Virginia. He
- [Health Literacy Month](https://health-hats.com/health-literacy-month/) - Last week I was describing a mutual friend to my son as pathologically optimistic. Overhearing us, my seven-year old grandson asked me what that meant. I started in with glass half full, glass half empty. Oh, Opa, he interrupted me, I know what optimistic means, what does pathologically mean? I was using language my grandson didn't understand and he questioned me.
- [Habits - Health's ingredients](https://health-hats.com/habits-healths-ingredients/) - Habits are the ingredients of health. My chiropractor tells me that my exercise habits should be sustainable. I need to keep them up no matter my life pace. Now I alternate days of 45 minutes of balance and core strengthening exercises with 60 minutes of recumbent bike riding. I could do that when working full-time and
- [I thank you God for this most amazing day](https://health-hats.com/i-thank-you-god-for-this-most-amazing-day/) - I thank you God for this most amazing day, for the leaping greenly spirits of trees, and for the blue dream of sky and for everything which is natural, which is infinite, which is yes. e.e. cummings An email this morning from the library told me that the reserved book, Wright Brothers by McCullough, had
- [Burning out professionals, oh my](https://health-hats.com/burning-out-professionals-oh-my/) - Several readers commented about the disruption of revolving door members of their professional health team - those leaving a practice, with or without notice. One asked, why can't organizations keep compassionate people-centered professionals? A good question. It takes time and effort as an e-patient to develop good relationships with professionals. When my clinicians have moved
- [Amateurs Among Professionals](https://health-hats.com/amateurs-among-professionals/) - I play in an amateur blues funk combo. Yesterday we had a gig at a local Jazz club. Hear it here. We played in a lineup of 9 amateur community bands, each led by a professional musician. An entrepreneurial professional created more than 20 such groups, Morningside Studio. All of us aspiring musicians have a
- [Improving experience - decoupling a moving train?](https://health-hats.com/improving-experience-decoupling-a-moving-train/) - I'm puzzled when people rate highly (very satisfied or satisfied) their experience in clinics and hospitals while still complaining about the experience. What is in the overall rating (would recommend)? Is it a comparison with other experiences that weren't as satisfactory, yet annoyances still occurred? I have spoken with people and caregivers who say, this
- [What's the Problem with the Experience of People at the Center of Care?](https://health-hats.com/whats-the-problem-with-the-experience-of-people-at-the-center-of-care/) - Wearing my many hats: e-patient, caregiver, nurse, informaticist, and leader, I am blessed with mostly positive experiences on my health journey. At worst, my experiences are seriously annoying. This week, attending a benefit for MITSS (Medically Induced Trauma Support Services), I'm reminded that not everyone is so lucky. As I scan the industry several problems
- [What is Health Data? An Introduction for Anyone](https://health-hats.com/what-is-health-data-an-introduction-for-anyone/) - I took a week off. I unplugged to attend the memorial service for my mom. Thanks to readers who inquired about my absence, worried if I was OK. I'm OK. This is the second in a series of posts about Health Data, Health Information, and Health Wisdom. The first in the series can be found here. This is
- [Fitting data into life's flow- a vexing dilemma](https://health-hats.com/fitting-data-into-lifes-flow-a-vexing-dilemma/) - This third in a series about health care data thinks about how data fits into the life flow of people. We collect data because we want to, need to, or are forced to. People observe their own health journey (life) and remember stuff: How I feel, how much I weigh, how much I eat, how far
- [What Data Isn't. It's not hope. It's not getting better or worse.](https://health-hats.com/what-data-isnt-its-not-hope-its-not-getting-better-or-worse/) - Data is not health and wellbeing. It's not getting better or worse. It's not hope. It's not trust. It's not kindness. It's not community. It's not peace. It's not ...... Data is at least once removed. It's an adjective or an adverb. Health is a noun or a verb. Data informs health. It describes it:
- [Grief Subsides, Inch by Inch](https://health-hats.com/grief-subsides-inch-by-inch/) - The surrealness of loss and grief subsides inch by inch. Thank god. I couldn't stay floating in that ever-deepening well of grief.
- [Data can motivate change. Changing data requires a change in life and work flow.](https://health-hats.com/data-can-motivate-change-changing-data-requires-a-change-in-life-and-work-flow/) - This fifth in a series of posts about health data thinks about the value we get from that data. In my last post I said, The best data has value because it reflects or motivates action. Action to improve health and wellbeing of and reduce cost to individuals and populations. Action to improve life flow of persons
- [Caregiver recovery - spiritual, then mental, then physical](https://health-hats.com/caregiver-recovery-spiritual-then-mental-then-physical/) - I took advantage of some rest and relaxation this weekend at Kripalu Meditation and Yoga Center. After six months of intense caregiving of my mom with frequent bi-coastal travel, I'm feeling an upsurge of my own MS symptoms. I spoke with someone whose mom died the same time as mine, who spent 13 years caregiving and managing
- [Doing Less Better](https://health-hats.com/doing-less-better/) - Getting better - Few magic wands or silver bullets. A couple of steps forward, one back at best. It's challenging to select when to move forward and when to wait. Does inching forward on many fronts get you better faster than moving a foot on fewer fronts? Does doing less better make sense? I play in
- [Increasing the Balance in Our Health Journey](https://health-hats.com/increasing-the-balance-in-our-health-journey/) - I'm using my health team actively this past month. I'm bone tired, stressed about work, worried about my health, all without my usual optimism and positive thinking. I'm out of balance. Yet, my mission is to increase the balance people, caregivers, and clinicians feel as they journey together towards best health. I need the balance,
- [Children of the Sun, Earth, and Moon](https://health-hats.com/children-of-the-sun-earth-and-moon/) - Aristophanes tells a creation myth that places humans of all three genders (androgynous, male, and female) in a primeval state of eternal bliss. However, we grew insolent in our blissful state and refused to properly honor the gods (and even tried to pursue them in their mountainous home). As punishment, we were split in
- [The procedure wasn't successful, but the experience was](https://health-hats.com/the-procedure-wasnt-successful-but-the-experience-was/) - I went to Beth Israel Deaconess Medical Center in Boston Friday for an outpatient invasive procedure. Pretty amazing. A well oiled production, well-informed, with amazing service. Upon arrival my wife and I received a pager to signal us when the prep nurse would be ready for us. We sat in an area asking us not
- [Chrysalis - Transformation for Caregivers](https://health-hats.com/chrysalis-transformation-for-caregivers/) - Spending the weekend with my 4-year-old grandson. "What should I write my post about this week?" I asked. "Chrysalis. Butterfly. Transformation," he said. What words, what concepts from the mouths of babes. I spoke with two caregivers this week about the transformation in their lives when their family member received a sobering diagnosis. What did
- [Mother's Day Haikus](https://health-hats.com/mothers-day-haikus/) - Apple didn't fall far Solid core, fruity parent Love ya Ma, always. Happy day, Mothers Grace, gratitude, guts Patient flowers Kids and grandkids all Loving, kind, chutzpah. Be proud. Thanks, ma. You did good.
- [Talking about Uncertainty](https://health-hats.com/talking-about-uncertainty/) - How do we people at the center of care speak about uncertainty in health among ourselves? How does uncertainty even come up in thought or conversation? I feel [fill in the blank]. Sometimes we feel poorly and speak to no one - the conversation is in our heads. Sometimes we feel poorly and seek advice
- [Managing Uncertainty - A Magic Lever for Best Health](https://health-hats.com/managing-uncertainty-a-magic-lever-for-best-health/) - People at the center of care (individuals, caregivers, family networks, and healthcare professionals) crave knowledge to make sense of and make decisions about their health journey. We need information we can understand that's relevant to us and our families. Unfortunately, it can seem dry like a desert or like drinking water from a firehose, often
- [Uncertainty and Comparative Effectiveness Research](https://health-hats.com/uncertainty-and-comparative-effectiveness-research/) - Last week's post began a discussion of managing uncertainty in the health journey. That journey has many decision points. We can make some of those decisions ourselves and we can rely on others to make some decisions for us - family, friends, health care professionals. But isn't health science-based? Doesn't research inform that science? Scientists knows that knowledge
- [Personal Experiments to Reduce Uncertainty and Manage Health](https://health-hats.com/personal-experiments-to-reduce-uncertainty-and-manage-health/) - Health consists of one experiment after another. What works? One of my challenges is neuropathy. People with diabetes and multiple sclerosis commonly have neuropathy. There's sensory and motor neuropathy. Sensory Neuropathy causes tingling and numbness, pins and needles and hypersensitivity, increased pain or the loss of ability to feel pain, loss of ability to detect changes in
- [Pausing - A Magic Lever of Best Health](https://health-hats.com/pausing-a-magic-lever-of-best-health/) - Yesterday, my wife took me to Boston Improv for my birthday. My daughter-in-law took me out for lunch. This week I found myself spacing out several times at my desk. I listened to the rhythms of conversation in meetings at work. Today, I played some blues on my bari sax. What do these scenarios have in
- [Amazing Grace](https://health-hats.com/amazing-grace/) - Did you hear the full video of Obama's eulogy at the Emanuel African Methodist Episcopal Church? I contemplation grace often, but I've never heard such an eloquent reflection. Grace is acceptance, forgiveness, bravery, humanity, dignity. Much to aspire to, often falling short. I contemplate grace while traveling on my health journey, gravitating towards team members with grace, visualizing grace
- [15 Minutes](https://health-hats.com/15-minutes/) - In my career I've often found myself bewildered when I'm amazingly ineffective in engineering a change that appears to be a no-brainer. I'm kind, smart, experienced, charismatic, brave and strategic. Where does the resistance come from? Don't they get it? What's the deal? Well, I've learned that you can't have more than a 15 minute advantage on
- [Hope - Magic Lever of Best Health](https://health-hats.com/hope-magic-lever-of-best-health/) - Hope - a magic lever for best health. Hope = optimism, expecting good results next. Hope feeds resilience. Spiritual strength contains hope. A key differentiator among those with chronic illness is less the degree of disability or pain, but the presence or lack of hope. For myself, when hope is absent, I feel much worse -
- [Advocacy](https://health-hats.com/advocacy/) - I went to my primary care doc last week for some blood work. The best practice means of checking a person's identity is for the professional drawing the specimen to ask a person their name and date of birth and confirm that these are the same as the order/prescription and label. The technologist did not.
- [Journaling - Experimenting](https://health-hats.com/journaling-experimenting/) - Journaling came up several times this week. Nurse leaders in a Leadership Academy spoke about change efforts they were making at work to increase involvement of patients, reducing noise in the hospital, trying to help their teams work better together. I spoke with someone facing increased symptoms also receiving more and more friendly, loving advice
- [Fear on the Health Journey](https://health-hats.com/fear-on-the-health-journey/) - Fear - an unwelcome, yet familiar, occasional companion on the health journey. A sinking feeling in the pit of your stomach. Your mind racing, reliving dreaded possibilities. Anxious panting with dreams of careening out of control. What helps? A certain companion, prayer, a drug, meditation, comedy, music, time. When I'm afraid, my family's reassurance, a
- [Managing Pain](https://health-hats.com/managing-pain/) - Several blog posts these past weeks on pain management. Read one here from Engage the Patient. Everyone has pain. Some are called stoic, some sensitive. I remember when my son, Mike, had a lung tumor removed. Curled up in a fetal position, hardly able to breathe, he told a nurse that his pain was a 6!! A six?! How could
- [Comedy Improv and the Health Journey](https://health-hats.com/comedy-improv-and-the-health-journey/) - I've written before about music improv and the health journey. Today I'm inspired by Tina Fey. She says: The first rule of improvisation is AGREE. Always agree and SAY YES. When you’re improvising, this means you are required to agree with whatever your partner has created. For the health journey this means accept what is as
- [Tension between rights and safety](https://health-hats.com/tension-between-rights-and-safety/) - My mom is failing - pancreatic cancer. I'm struggling with the balance between her desires and her safety. I firmly believe in Empowered, Equipped, Engaged, Enabled individuals on the health journey: e-patients as described by the Society for Participatory Medicine. I also believe in Using Power Honestly, Wisely, and Respectfully as written in the Advocates Way of
- [Journey's end - Goodbyes](https://health-hats.com/journeys-end-goodbyes/) - My mom is saying goodbye. Goodbye to family, friends, and now peripheral health team members. She hates goodbyes, more than dogs. She's been mortally afraid of dogs since a german shepherd jumped on her when she was in hiding more than 70 years ago. A deliberate end to the journey. She's giving away her possessions,
- [Humor in a Once in a Lifetime Experience](https://health-hats.com/humor-in-a-once-in-a-lifetime-experience/) - Today my mother said this was a once in a lifetime experience. Ha. What a sense of humor. Last week she talked about the 5 P's of her life - Pillow. Pee, Poop. Pill, and Pain. I'm laughing and crying. Six weeks ago she went to the orthopedic doc wondering about her sore knee. She
- [Shrinking world, shrinking control.](https://health-hats.com/shrinking-world-shrinking-control/) - Shrinking world, shrinking control. As my mom progresses through this ending period of her health journey, she needs more and more help with the basics. She demonstrates her customary approach to life by extending her arms out wide. Now she shows her life by hugging herself. It's all about me now. She wants to finish her goodbyes
- [Last days - a bittersweet journey](https://health-hats.com/last-days-a-bittersweet-journey/) - She's walking on a people mover. You know, the moving sidewalk in an airport. My mom finds herself going from blue to the sunlight. A few days ago she was alone, yesterday she saw her Opa, her father, and a beloved minister, who died decades ago, on the people mover. Wonder when or if she'll
- [The end - not alone](https://health-hats.com/the-end-not-alone/) - Journey's end - team effort - for ender, family and family caregivers. This post is for the family caregivers, caring for the ender, the family and each other. A raw and primal passage for the whole team. The ender in the eye of the storm with spiraling waves buffeting family and caregivers, seeding their own
- [Who's your health co-pilot?](https://health-hats.com/whos-your-health-co-pilot/) - As an e-patient advocate, I passionately believe in each of us being the pilot for our own health flight. So many legs in that health flight. While its a non stop flight for each of us from birth to death, it's actually a journey with innumerable hops. As I re-enter my own health journey with
- [Closing the loop - the last P - Parting](https://health-hats.com/closing-the-loop-the-last-p-parting/) - Closing the loop with grief. The P's of dying pile up - the first six P's from my mom, the last two from others: Pillow, pills, pee, poop, pain, phone + pistol and peace. Now we deal with Parting. As an experienced observing participant, parting offers a re-entry atmosphere of connection, exhaustion, awkwardness, ambivalence, busyness, reminiscence, and loneliness. I'm
- [Labels - DisLabels](https://health-hats.com/labels-dislabels/) - I'm disabled. Iidentifyashaving a disability. Someone else says I'm disabled. Do Ihave a disability? I'm a family caregiver of someone with a disability. Do I have lived experience? What does all this mean? This week I found myself in several conversations about disability. One was with a person newly diagnosed with a chronic condition facing
- [Take a break - now](https://health-hats.com/take-a-break-now/) - Today I'm bone tired. Tired of grief, tired of having MS. Interesting how physical health and mental health go hand in hand. Medical challenges weaken our reserves, at the very least make us crabby fearful, anxious - tired. Medical challenges drain our ability to coördinate, think critically, advocate for ourselves, have perspective, when we most
- [Values for Managing Health](https://health-hats.com/values-for-managing-health/) - As I transition out of this episode of my life with the passing of my mom, I'm reflecting anew on being a blogger, Health-Hats, who is discovering the magic levers that impact best health. I'm back to values - what's most important to me as an e-patient, caregiver, nurse, leader, informaticist, and family member. Anyway, what do I value? In
- [Satisfaction, Smatisfaction - any good?](https://health-hats.com/satisfaction-smatisfaction-any-good/) - More and more often I'm receiving satisfaction surveys from providers of health care Interesting concept: satisfaction. Satisfaction with what? Satisfaction with service, respect, knowledge, empathy, partnership, noise? I expect that members of my team will listen to me, help me listen to them, not waste my time, be nice to me, tell me how much stuff costs in
- [Adjusting to new chronic illness](https://health-hats.com/adjusting-to-new-chronic-illness/) - Adjusting to new chronic illness involves moving away from traditional medical/doctors/health care system to controlling controllable stress and recalibrating function. "Eventually, you adjust to a new normal," says Lisa Copen, founder of Rest Ministries, Inc. Controllable stress takes many forms - toxic relationships, fear, anxiety, impatience, sleeplessness.... Managing those stresses creates space and reserves to manage uncontrollable stress - grief, new
- [Mistakes - Finding your Groove Again](https://health-hats.com/mistakes-finding-your-groove-again/) - We make lots of mistakes improvising while playing music in my jazz combo - wrong notes, lose our place, no feel for the rhythm. No mistakes never happens. The music is good when the group communicates, recovers and finds the groove again. There is never no mistakes on the health journey. Mistakes range from missed doses, added pounds, underwhelming
- [A magic lever to best health - data and information](https://health-hats.com/a-magic-lever-to-best-health-data-and-information/) - I work in a human services agency. We support individuals with disabilities. We help people achieve their hopes and dreams in their communities. One of our strategic activities is to increase the information available to the persons we support, staff who support them, management who supervise staff, and our funders. The information helps us all keep a
- [Grace](https://health-hats.com/grace/) - This week I'm experiencing a melding of grief and grace. Grief: My multiple sclerosis is progressing a bit. I'm a little more unsteady, my left leg feels weaker, it's buckling at times. A disheartening reality of a progressive chronic disease. Why me? Sorry me. What's my future look like? Grace: I accept what is. I'm
- [Community Capital - a prescription for best health](https://health-hats.com/community-capital-a-prescription-for-best-health/) - This week I heard someone speak about the importance for everyone to have the opportunity to be part of a community. I am part of many communities: my family, my work teams, my neighborhood, the virtual e-patient community, this blog community, nurse communities, music communities. My neighbor, an amateur photographer, invited us to her first
- [Leadership in Family Health Crises](https://health-hats.com/leadership-in-family-health-crises/) - Sudden, severe illness or protracted undefined illness likely causes a family health crisis. Families in health crisis start from a position of acute stress yet have much to do. For a frame. consider that physical health starts with spiritual health, then mental, then physical. For the family spirit is morale, mission, purpose, direction. Mental health is
- [Sounding like yourself](https://health-hats.com/sounding-like-yourself/) - Two musical events for me yesterday: my combo rehearsal and Victor Wooten, Steve Bailey, JD Blair, and Derico Watson at Berklee School of Music. The latter, 2 virtuoso bass players and 2 amazing percussionists, demonstrated energy, experimentation, creative inclusion of the audience, and remarkable unspoken communication among themselves. My combo - not so much. Some of us
- [Born again customer service](https://health-hats.com/born-again-customer-service/) - A car rental experience from hell. Took 2 1/2 hours to complete car rental. Poor signage, walked 3/4 miles to wrong location. All systems down. Only one person registering. Hour to wait in line to get car. Gave us a car from wrong vendor. Told to drive wrong car around to front of lot. Got
- [Not alone together](https://health-hats.com/not-alone-together/) - A common thread of love, relationships, and family caregiving is not being alone together. I'll add seeking and accepting help 
- [What do Caregivers need to manage health?](https://health-hats.com/what-do-caregivers-need-to-manage-health/) - What do caregivers want from Health Information Technology (HIT)? Most caregivers, people at the center of care, don't think about HIT. They think about what they need to manage individual health, theirs or the person they support: Quality of life Control of their life Peace of mind, rest, respect Relief from pain and worry Reduction
- [Control and Connection - HIT](https://health-hats.com/control-and-connection-hit/) - Last week I began a series, What do Caregivers need to manage health?, about Caregivers and Health Information Technology (HIT). Due to technical difficulties, my subscribers did not receive an email of this post. Find last week's post here. I listed 15 needs of people at the center of care including: Control of their life Connection to others - not alone
- [EHR Access for the Family Caregiver](https://health-hats.com/ehr-access-for-the-family-caregiver/) - We're looking at technology that can help the primary caregiver support someone's health journey.
- [Quality of Life for People at the Center of Care](https://health-hats.com/quality-of-life-for-people-at-the-center-of-care/) - People at the center reflect often about quality of life - Sometimes in relation to decisions about medical care as in, I’d rather have quality of life than chemotherapy or for the disabled, we value individuals experience and quality of life. What does quality of life mean? Whose quality of life? I find it hard
- [Personal risk management - When s***t happens](https://health-hats.com/risk-management-when-st-happens/) - When I ask my doctors what worries them the most about my future health, both my neurologist and primary care doc say, they worry that I'll fall. Everybody faces risks - too little or too much medicine, anxious, scared, or melt-down, infection, stranded, lost, jobless, forget something important, accident, heart attack, caregiver or neighbor moves, power goes out,
- [Communicating End-of-Life decisions](https://health-hats.com/communicating-end-of-life-decisions/) - My 87-year-old mother and I have had many chats over the past 15 years to plan for end-of-life. As you can imagine, the content of these chats have evolved over the years. Now she's quite certain about what she wants from her life at this stage. Now that she's so clear and she's worked with her lawyer
- [Understanding someone else's experience - oh my!](https://health-hats.com/understanding-someone-elses-experience-oh-my/) - Understanding someone else's experience - oh my, so hard! It's difficult enough to understand my wife's experience. I have to pay attention, let my preconceived notions, and mind rants go. And we've been together more than 40 years, love each other, know each other. One of the most challenging parts of my career has been
- [Leaning Tower of Babel - Give me my Damn Data?](https://health-hats.com/leaning-tower-of-babel-give-me-my-damn-data/) - Today I attended a meeting with 9 people, including me, speaking 5 languages - Mandarin, Cantonese, Vietnamese, English, and bureaucratic / medical -ese. It was a board meeting of a Chinese-Vietnamese community association of family caregivers to individuals with disability. Double translations were occurring. The topics included advocacy and managing the state health and public school systems.
- [People at the Center -> Person at the Center = Gaps](https://health-hats.com/people-at-the-center-person-at-the-center-gaps/) - A dear friend, Vern Schmaltz, died this week of ALS. He had so looked forward to retirement. His wife, full-time caregiver, faces a considerable gap in her life. "What will I do in the morning?" For the past months they've worked together to manage the daily routines of his life and navigate the medical system.
- [Caregivers Have Other Lives Too](https://health-hats.com/caregivers-have-other-lives-too/) - I'm amazed at what people are capable of. This week I met a nurse leader who manages a neonatal intensive care and transport unit while mothering 5 children (one of her own, 3 adopted and one foster) - I spilled into amazement when she couldn't meet with me at a particular time because she had Rotary obligations.
- [Expanding Engagement and Capabilities of People at the Center](https://health-hats.com/expanding-engagement-and-capabilities-of-people-at-the-center/) - Some people want someone else to be the leader in their health care journey. Others take offense if anyone even hints at taking that lead - with every stripe of variation in between. Same goes for using technology - some seek technology and use it, for others it's not even in their universe of thought, some
- [Tell me the damn cost up front!!](https://health-hats.com/tell-me-the-damn-cost-up-front/) - Did you read the Sunday New York Times' article about the $117,000 surprise medical bill? Out-of-network surgeon assistant charged $117,000. Insurance didn't pay. Person fought the charge. Threatened with a lawsuit, he eventually paid. Ridiculous. Made me think about the major siding job we had done on our house recently. Imagine if the contractor had
- [Get to here from there - lessons from a teenager](https://health-hats.com/get-to-here-from-there-lessons-from-a-teenager/) - I was 17, hitchhiking through Europe, found myself lost, hiking alone through the Rondane Mountain Range. A rookie mistake. I'm geographically challenged, I'd been warned not walk by myself. I had a map, a compass, some food and water, and no sense. I was hiking a trail from one hikers' chalet to another. Mountains were giant
- [Vacation](https://health-hats.com/vacation-2/) - I'm on vacation visiting a friend who I first met when I was 8 years old. We've been close friends ever since. His wife asked me how I became a nurse. Well, I was 19 looking for a job and had a choice between reading water meters and becoming a psychiatric nurses' aide. Reading water
- [The Muscle Cramps of the Health Marathon](https://health-hats.com/the-muscle-cramps-of-the-health-journey-marathon/) - Who does what in a health team? Who has control? How does the team deal with questions of competence and capacity. The tension between rights and safety can and often should consume a health team. Can my mother live alone? (Of course I can!) Should my brother drive? (I only drive during the day!) I
- [Technology is the cutlery and the dessert](https://health-hats.com/technology-is-the-cutlery-and-the-dessert/) - I'm preparing a presentation about Caregivers and Health Information Technology to be delivered in a month at the HIMSS14 conference in Orlando with MaryAnne Sterling. So many challenges as caregivers, as persons in the center of care, as health professionals, as administrators, and as developers. First, there are different levels of caregiving. There's the caregiving of life
- [Focusing on the Basics](https://health-hats.com/focusing-on-the-basics/) - The journey is built on the basics. The magic levers: good diet, sufficient exercise and rest, family/individual/work balance, stress reduction, an aligned team
- [That Sinking Feeling of Stress](https://health-hats.com/that-sinking-feeling-of-stress/) - You know that sinking feeling you get in the pit of your stomach when something is seriously wrong? Often accompanied by inability to focus on the here and now (your music, your kids, your grandkids, your partner), trouble sleeping, mind racing? Happens when you get bad news, when someone treats you like crap, when you
- [Simple Gifts](https://health-hats.com/simple-gifts/) - Last week a friend asked me, What's your favorite song? So many went through my mind - really, my mind was paralyzed, I couldn't think of any. So I said, Simple Gifts, the Shaker tune. We sang it at our wedding - after the ohmms. A question on the 41st anniversary of the day I met my wife.
- [Disclosure - Revealing health issues](https://health-hats.com/disclosure-revealing-health-issues/) - Disclosure: The act of revealing something. How does disclosure impact life for the disabled, chronically ill, or their caregivers? Disclosure has a threshold: before disclosure, after disclosure. Revealing something that may impact success or perception. I have multiple sclerosis, mental illness, am an amputee, have a son with autism, am very short, have chronic pain,
- [Driving your own health journey](https://health-hats.com/driving-your-own-health-journey/) - How is it that people develop and learn to drive their own life, their own health care journey? Our 5-year old grandson usually gets picked up from school on Thursdays by my wife - a highlight of his week. We were on vacation. The email notification from his dad to the school of the change
- [Engagement after the Olympics - a Marathon not a Sprint](https://health-hats.com/engagement-after-the-olympics-a-marathon-not-a-sprint/) - I'm watching the Olympics a lot this week. These athletes are so focused and consumed with their event. Many of us committed to participatory health have a similar focus in our health journey or the health journey of those we support - head down, training, grinding, overcoming the next obstacle. Eventually, periodically we can take a moment or
- [Authority and confidence does NOT equal right](https://health-hats.com/authority-and-confidence-does-not-equal-right/) - I play saxophone in a combo - I'm the only horn. I come in with the melody - after we've improvised - with authority and confidence. My teacher tells me, "come in strong whether or not you're right. The band will adjust. Better than hesitating and coming in weak." I thought about this when I
- [Making a difference for caregivers!](https://health-hats.com/making-a-difference-for-caregivers/) - MaryAnne Sterling (@SterlingHIT) and I were honored to discover that we had been invited to give the first presentation to the Health Information Management Systems Society (HIMSS) about caregivers-Supporting Family Caregivers on the Front Lines through Health Information Technology link. 40,000 people attended the conference last week and about 200 attended our presentation. HIMSS is waking
- [Kissing the Boo Boo](https://health-hats.com/kissing-the-boo-boo/) - Health care is a tower of Babel. It's the rare person who can translate across every part of health care. Some part of health care is a mystery to someone. Doctors often don't understand the language or culture of the people they support. Caregivers often don't really understand the person who they care for even
- [Access to your health team - Asynchronous communication](https://health-hats.com/access-to-your-health-team-asynchronous-communication/) - Much of health care depends on relationships. What do people at the center of care and professionals in health care look for in their relationship? Much as with any relationship - access when needed, exchange of information, listening, respect, speaking the same language, understanding each other's values and priorities, follow through. Relationships depend on access to each other - particularly tough in
- [Can health care organizations learn?](https://health-hats.com/can-health-care-organizations-learn/) - I'm stuck. I'm obsessed with how organizations learn. In my day job as Vice President of Quality Management at Advocates, Inc., we've been considering how to promote Advocates as a learning organization including persons supported and their networks, those closest to the work, and all partners. How thrilling! What a goal!! But how do we
- [Defining Patient and Family Engagement - Threads in the Fabric](https://health-hats.com/defining-patient-and-family-engagement-threads-in-the-fabric/) - I take part in many forums that use the term patient engagement. Most often it means patient compliance with doctors' orders. I struggle that there aren't terms for clinician engagement, clinic engagement, hospital engagement, or vendor engagement. The health journey is a series of relationships, partnerships, with shifting foci of ability, skills, priorities. Tools, information, work flows and life flows
- [Health Hats Haikus](https://health-hats.com/health-hats-haikus/) - Magic levers find Best health / best life traipse on Up for every down Superpowers we Find relief in our skin From bittersweet unrhythms Not so easy, it? Haiku pretzel melody Fun though brief riff
- [Listen to the music](https://health-hats.com/listen-to-the-music/) - Alignment is tough in music and in health. Everyone's talent, passion, and goodwill goes up in smoke when the alignment / arrangement isn't there. How do we align in health care? 
- [Worry, a familiar & unwelcome companion](https://health-hats.com/worry-a-familiar-unwelcome-companion/) - Worry, a familiar and unwelcome companion on the health journey. What do I have? Will I have to adjust my life (further)? Can I keep the faith? Who will help ME? What have I missed? Can I do it all? Fretting weakens- stomach aches, binge eating, inattention, sleeplessness, short fuse-what a pain! Who, on the
- [Limits](https://health-hats.com/limits/) - Limits. Spending time this weekend with friends of 30-40-50 years - lots of young kids my grandsons' ages in the mix. Watching the constant shifting dance of setting limits, testing limits. Children cutting their teeth on their parents and grandparents. Also observing us 60 something oldsters bumping up against our physical capabilities - joint disease,
- [Should you bring someone with you to your next doctor's appointment?](https://health-hats.com/should-you-bring-someone-with-you-to-your-next-doctors-appointment/) - Should you bring someone with you to your next doctor's appointment? If you're asking, the answer is yes. How do you be the best companion if you're asked? Prep in advance, listen, record, ask questions. Know why you're going? That means both What does the person want to accomplish during the appointment? and Why are you accompanying them? There are many types of visits.
- [Grief in passing](https://health-hats.com/grief-in-passing/) - My son, Mike Funk, would have been 38 yesterday. I miss him. Mike had a hard young life and came into our lives wounded with spirit, charisma, determination, and wackiness. The terminal diagnosis came shortly after finding love in his life. So thrilling, so sad. I've been blessed with an appreciation and curiosity about death
- [Health Literacy - a Magic Lever](https://health-hats.com/health-literacy-a-magic-lever/) - How do I take two tablets twice a day? What did the lab work show? I don't want to take that kind of medicine. I just want to walk daughter down the aisle. My shoulder hurts when I'm trying to sleep. Can I believe what I read on the web? When do I go back to
- [What do I Need Electronically to Work With My Health Team?](https://health-hats.com/what-do-i-need-electronically-to-work-with-my-health-team/) - What do I need (must have) electronically to help me work with my health team? All team members (including me) operate off the same data set. This means that we know and agree what are the most important pieces of information about me (the minimum data set). That these pieces of information are collected somewhere, shared, merged, updated and corrected easily as needed. My
- [Health Partners](https://health-hats.com/health-partners/) - Many years ago my wife and I got a letter from Zimbabwe: Dear Mr. and Mrs., I'm your son's health partner. He's fine now, but he had malaria, was in the hospital for several weeks, and almost died. Our son had gone to Zimbabwe as a development aide worker. During his team's training, my son asked me to
- [Health - It's All Relative](https://health-hats.com/health-its-all-relative/) - One of my first gigs in my nursing career was working at the Detroit Rehabilitation Institute. I was working with a 30-year-old man with quadriplegia from a gunshot wound to the neck practicing driving his motorized wheelchair with a mouth stick. Coming down the hall towards us was a 40-year-old man recovering from a severe stroke learning to maneuver his wheelchair with
- [Walking and Chewing Gum at the Same Time](https://health-hats.com/walking-and-chewing-gum-at-the-same-time/) - As LBJ said about Gerald Ford, I can't walk and chew gum at the same time. Yesterday, while rehearsing and improvising on the baritone saxophone, I reflected on my continued difficulty keeping my place in the tune while improvising. Either I listen and keep my place or I improvise, get lost, and lose my place -
- [Help the Helper](https://health-hats.com/help-the-helper/) - This week a friend of mine experienced a sudden change in her life when a parent had an injury during a fall. My friend suddenly became caregiver and care coordinator, while maintaining a demanding full-time job and being a mother and spouse. An organized, resourceful person, my friend finds herself in a new and stressful
- [Things That Go Bump in the Night](https://health-hats.com/things-that-go-bump-in-the-night/) - From goulies and ghosties and long-leggedy beasties And things that go bump in the night Good Lord, deliver us! During the day I'm pathologically optimistic. Life is good. I won a lottery I didn't buy a ticket for. I am at one with my body, whatever shape it's in. My demons come out at night. Why me? I'm
- [Finding a New Doctor, Oh My! Part 1](https://health-hats.com/finding-a-new-doctor-oh-my-part-1/) - My neurologist has moved away. I'm grieving. Granted he was a curmudgeon with mixed bedside manner. But we were very compatible. He was always available (email return within 24 hrs), he answered my questions, asked if I had any more, educated me, reassured me, and understood my life goals. The electronic medical record was state of
- [If it were my life.....](https://health-hats.com/if-it-were-my-life/) - Health team relationships challenge me as much as any relationship. Especially the advice part. Some people are very free giving advice, some are comfortable getting advice. I'm free with giving advice and very mixed at receiving it. The worse I feel, the harder it is to listen for the germ of truth in the advice given, solicited
- [A Powerful Union: Relationships within Health Teams](https://health-hats.com/a-powerful-union-relationships-within-health-teams/) - The relationship between health team members, especially people and their clinicians and caregivers, frequently arises as a topic of this blog. Let me share with you one of the values of Advocates. I work for Advocates as VP of Quality. We express our values in Advocates Way. Advocates provides person-centered, community-based support services to individuals and
- [Honoring and aligning silos](https://health-hats.com/honoring-and-aligning-silos/) - Teaching in a nursing leadership academy this week about acting as a change agent or change catalyst in an organization or team. Common theme for the participants - frustration overcoming silos, working across silos, aligning silos - silos, silos, silos. As a family member, as a nurse, as a band member, as a person with
- [Test driving and consent to share](https://health-hats.com/test-driving-and-consent-to-share/) - This health journey I'm on can be quite a ride. Tomorrow I'll test drive a new neurologist. They want me to bring certain information from my previous neurologist: Recent notes, medications, MRIs on CD. They can't just go get it. Their system doesn't talk with the previous neurologists' system. I know I'm going to have
- [Test driving - Still shopping](https://health-hats.com/test-driving-still-shopping/) - I test drove a new neurologist this week. I'm still shopping. Two factors affected my continued shopping: no spark between us and no portal / doesn't communicate by e-mail. The practice was cool and efficient, the physical exam was thorough. Nothing asked about me, my experience with MS, my goals, my challenges. No relationship building. I asked
- [Ripples in Health](https://health-hats.com/ripples-in-health/) - Drop a pebble in and watch the ripple. Mesmerizing. Several ripple experiences this week on health journeys. A colleague caring for parents as they slip toward dementia. Challenges for the parents, challenges for their children. A friend whose parent had a stroke canceled a scheduled meeting. Children sick - parents can't make it to work. Health is not just about
- [Giving Thanks](https://health-hats.com/giving-thanks/) - My super power is accepting what is. Doesn't mean I settle for what is. After all I'm a catalyst for change. Accepting and appreciating what is makes for a solid foundation and a realistic start. I can't get from here to there if I don't know - and value - where here is. I give
- [Monitor and Alert](https://health-hats.com/monitor-and-alert/) - Working in Quality Management in health care, I'm driven by 3 things: 1) that we do no harm, 2) that we meet our standards and commitments, and 3) that we continually improve the care we give the people we serve. Health care is risky business. People are in need, their defenses are down. Providers of health care
- [Belonging to your health team](https://health-hats.com/belonging-to-your-health-team/) - Belonging to your health team. Seems oxymoronic. Of course you belong to your health team. There is no health team without you. Yet sometimes people feel out of control, not accepted by their team. Maybe it's because it's not their team. Professionals and caregivers sometimes act as if or really feel that they are the team, separate
- [Found a new neurologist! So relieved](https://health-hats.com/found-a-new-neurologist-so-relieved/) - Found a new neurologist! So relieved. What if ... I have a relapse and have no doc? Anyway. First good sign - he had read my record before the visit and had a list of questions for me. "What's important to you?" He wrote down my answer, "maintain function as long as possible, no meds that
- [Oatmeal for Break](https://health-hats.com/oatmeal-for-break/) - Today, I'm a bit overwhelmed with my self-committed obligations: write a blog, finish the family birthday calendar, print the Xmas cards, be a good member of my in-person and virtual teams (professional, community, family), take my medicine, play music, exercise, eat well, rest enough... OMG. Why do I do this? Am I nuts? What would
- [Xmas: Honor the Caregivers.  Help the Helpers.](https://health-hats.com/xmas-honor-the-caregivers-help-the-helpers/) - 92 million caregivers in the US. Lord, so many. Only growing. How many of these caregivers need care? My wife, an occupational therapist, comes home with stories of 90+ year-old spouses taking care of their 90+ year-old honeys. In health, the focus is often on the person at the center of care, the person with a diagnosis or with
- [Clinicians are from Mars, e-Patients are from Venus](https://health-hats.com/clinicians-are-from-mars-e-patients-are-from-venus/) - Are clinicians from Mars and e-Patients from Venus? My experience is e-patients and clinicians can agree that they seek best health. Yet there is such a disconnect, such frustration, so much of the time. Participatory medicine strives to bridge the gaps between patients, caregivers, clinicians and health care systems. Caring about best health and getting to
- [Book Review: Engage! Transforming Healthcare through Digital Patient Engagement](https://health-hats.com/book-review-engage-transforming-healthcare-through-digital-patient-engagement/) - As a member of the HIMSS eConnecting with Consumers Committee that sponsored the book, Engage! Transforming Healthcare through Digital Patient Engagement I knew in advance how good it was going to be. My colleagues, the editors (Jan Oldenburg, Dave Chase, Kate Christensen, and Brad Tritle), have that valuable rare mix of profound knowledge, humility, and practicality. The
- [Spring Musings](https://health-hats.com/spring-musings/) - 8am: Just finished an 11 mile ride on my recumbent trike in an hour and a half. I've been riding a recumbent stationary bike in the basement 30-50 miles per week in the basement all winter hoping it would keep my strength up. Takes so long to build up when I lose it. It worked!!
- [Trust- Another Magic Lever](https://health-hats.com/trust-another-magic-lever/) - Recently, Joan Vitello, Associate Chief Nurse at Brigham and Women's Hospital, inspired me talking about 'trust' at a nursing leadership seminar. I've thought about it every day since. Trust is a magic lever of best health - for e-patients, caregivers, professionals, teams, and organizations. Trust accentuates the possibilities: Trust that I'm OK, however I feel.
- [Sabbatical Ends](https://health-hats.com/558/) - As many of you readers know, I've been on sabbatical for the past 7 months after being laid off. It's been a gift to my health - rest, catharsis, grandkids, networking, exercising, music, writing, teaching, exploring, and thinking. I've played in the world of entrepreneurs and start-ups, simulation, mobile health, and e-patients. Attended 5 conferences (New Orleans, Orlando,
- [Disabled](https://health-hats.com/disabled/) - Started a new job - first day - a form asked if I was disabled - along with race. Hmmmm. I checked yes. Last week, went to a church function with my mom. Several people with canes and walkers, including me. Buffet style meal. Disabled first in line with gentle insistent assistance. I was guided
- [First, we listen](https://health-hats.com/first-we-listen/) - Life is good. Listening - a magic lever for best health.
- [Work-Life Balance](https://health-hats.com/581/) - Once again, I'm self-focused as I transition from sabbatical to full employment. This too will pass:) After 2 weeks I'm acutely aware of my struggle to keep up my exercise, diet, family time, and music, not to mention all the non-work professional activities that accrued during my sabbatical. Fortunately, my new work environment is both
- [First, I Listen - Improv](https://health-hats.com/firsti-listen-improv/) - As I wrote a few weeks ago, First, we listen, is the tag line of Advocates, Inc., my current employer. The power of listening continues to move me in my work and my music. I'm finding it relatively easy to listen 50% of the time, 75% is a serious challenge. My energy comes out of my
- [Crossing Thresholds](https://health-hats.com/crossing-thresholds/) - We cross many thresholds in our health journeys: before the diagnosis / after the diagnosis; outside the office / inside the office; before the pain / after the pain; having enough money / having too little money; before being cared by xxx / being cared by xxx; in control / less control; before taking the
- [My New Job](https://health-hats.com/my-new-job/) - I've received many notes asking about my new job as VP of Quality Management at Advocates, Inc. Advocates' services are designed to meet the unique needs of elders, families and individuals with mental health challenges, addiction, developmental/intellectual disabilities, autism, brain injury and other life challenges. Advocate employs over 1100 staff members and serves 20,000 individuals at over
- [Peace with Aloneness](https://health-hats.com/peace-with-aloneness/) - All humans have at least two things in common, they experience tragedy and aloneness. Aloneness features prominently in the health journey. We fortunate ones have supportive, often present health teams. Still it's our journey to travel - often alone - as an ePatient, caregiver, or professional. What is aloneness? This past week I've asked many.
- [Are We Safe?](https://health-hats.com/are-we-safe/) - Sometimes our health journey seems fraught with peril. So much can go wrong. Unexpected danger lurks around every corner. Yet, team members (caregivers, loved ones, professionals) accompanying us on our health journey all seek a safe ride for us and themselves. Safety is complicated. It begs many questions. What kind of safety - emotional, physical,
- [Dialogue](https://health-hats.com/dialogue/) - Let me tell you about our family's experience as a team, talking, supporting, and coordinating during the terminal phase of our son, Mike's death from metastatic melanoma. Mike was living near Buffalo with his girlfriend, going to school, my wife and I lived in Albany, and my other sons lived elsewhere. Mike's girlfriend's parents (I'll
- [Love - Magic Lever to Best Health?](https://health-hats.com/love-magic-lever-to-best-health/) - My aunt got married to her longtime partner last week. Mazel Tov! My wife and I just celebrated our 38th wedding anniversary - we're in love. My parents were in love, yet my dad was gay. Love is complicated. Especially when you add other people - society. I hail the recent Supreme Court decision to
- [Stoking the Fires](https://health-hats.com/stoking-the-fires/) - Woke up each morning last week wondering where I would find the energy to managing everything? Exercise, diet, music, family time, work, blog, other professional endeavors, medication, massage, acupuncture. Feel like my health depends on fine balance of all these things. Made me wonder how people do it who don't have the good fortune, the family,
- [Trust and choice: magic levers](https://health-hats.com/trust-and-choice-magic-levers/) - We had a family birthday party this morning. I'm reflecting on the tragedies we've weathered, the illnesses we've endured, the fun we've had as our kids grew up. Now our kids are parents with grandsons learning to value and trust family while testing boundaries and making decisions about their environment and relationships. Talking now with
- [PCORI- Patient Centered Outcomes Research - and us](https://health-hats.com/pcori-patient-centered-outcomes-research-and-us/) - You may remember that I'm a Patient Reviewer for PCORI (Patient Centered Outcomes Research). PCORI, a federal initiative, helps people make informed health care decisions, and improves health care delivery and outcomes, by producing and promoting high integrity, evidence-based information that comes from research guided by patients, caregivers and the broader health care community. It's vision
- [Start with the end in mind](https://health-hats.com/start-with-the-end-in-mind/) - How do we start a journey? We decide we're going to work, home, to Boston, the Cape, a destination. Then we plan the route and adjust it as impediments arise (traffic, construction, weather). Same for our health journey - where are we headed? For me since I have a chronic, deteriorating condition, I'm headed to
- [Health-Hats: It's Been a Year](https://health-hats.com/health-hats-its-been-a-year/) - I started this blog a year ago, more than 70 posts - now settling into one a week. Thanks especially to Jane Saransohn-Kahn who set me on this journey, Eric Pinaud and Jodi Buckingham who provide technical support, and Kathy Pooler, who inspires me and encourages me to write regularly. My almost 100 readers provide
- [Hardwiring Continual Learning](https://health-hats.com/hardwiring-continual-learning/) - I'm learning to type. Amazing after all these years that I still hunt and peck. Cool though to know that I can still develop new brain pathways and muscle memory. Continual learning with a swiss cheese multiple sclerosis brain:) I watch my grandsons learn, they just keep at it. Fearless repetition. Why is it that I'm
- [Helping](https://health-hats.com/helping/) - As a nurse, caregiver, informaticist, and consultant, I help others. Intriguing concept - helping - much dynamic tension. Altruism, emotional gratification, self-satisfaction, egotism, persistence, profit, dependence. After nursing for several years I joked that nursing was an acceptable form of nosiness. I'm involved with people at intimate moments in their lives. I am gratified to participate. As an informaticist, helping clinicians
- [Funding Impacts Patient-Centered Research](https://health-hats.com/funding-impacts-patient-centered-research/) - I wrote about Patient-Centered research in a previous post: Just-In Time Decisions. A different version of that post appeared in the Society of Participatory Medicine's blog. Susan Woods responded to that post with the research funding system doesn't really work for anyone. It is in concrete, Agreed. It always helps to follow the money. I am a member of a Boston-based contingent of ambassadors to PCORI (Patient
- [Just-in-Time Decisions](https://health-hats.com/just-in-time/) - Is there a chance that focus beam brain radiation will make a difference to quality of life for a terminal patient? Will the treatment prescribed (any treatment) cause depression? Will acupuncture make a difference? Will all this attention to one family member negatively impact the other members? What do I do when my doctors disagree?
- [It's a Caregiver Xmas](https://health-hats.com/its-a-caregiver-xmas/) - I started crying today. My wife reminded me to rinse my mouth with salt water. I had a tooth extracted. Silly, but my heart was full. What would I do without my caregivers? My wife, my sons, daughters-in-law, sister, even grandsons. My 4 year old grandson, when we play jungle animals, wants me to be
- [Improvisation, rhythm, repetition, and caregiving](https://health-hats.com/improvisation-rhythm-repetition-and-caregiving/) - I'm learning more about improvisation in my musical life - jazz improvisation. In my early days I had thought that the improviser just let loose playing whatever came through his fingers with the rhythm section in the background. Creating music on the fly. I'm learning - not so much. The structure of the tune - melody, chords, rhythm - provide
- [Data, information, knowledge, wisdom, action](https://health-hats.com/data-information-knowledge-wisdom-action/) - I have written about data and research in recent posts. Readers generally understand about data that is in their electronic medical record (EMR), but several readers have asked me about my interest in patient centered outcome research (PCOR). How does this affect me? Why your interest? Let me explain: The field of knowledge management speaks of DIKW Hierarchy (Data,
- [Electronic Medical Record Design Challenge](https://health-hats.com/electronic-medical-record-design-challenge/) - The Office of the National Coordinator (ONC) of Health Information Technology (HIT) - part of the Department of Health and Human Services (HHS) announced the winners of the Electronic Medical Record (EMR) Design Challenge. See the winners here. The design goals included: Improve the visual layout and style of the information from the medical record Create a
- [Magic Lever - Tracking Health](https://health-hats.com/magic-lever-tracking-health/) - Today, the Pew Internet and Life Center published a report, Tracking for Health (link here). In previous posts, I've said that keeping track of symptoms and goals is a magic lever for me in managing my health. I keep track on a spreadsheet of walking, triking, playing my saxophone, sleep, and my weight. It helps me maximize my
- [Magic levers of cultural change](https://health-hats.com/magic-levers-of-cultural-change/) - I'm traveling these days in many bands of committed people and groups striving to improve the health journey for themselves, their loved ones, and patients in general. These bands include advocates, novice and seasoned entrepreneurs, trade associations, providers of care across the continuum; and governmental and quasi-governmental entities. Each band slogs through terrain of incredulity, frustration, anger, hopelessness, and desperation with winds
- [Reading your own EKG?](https://health-hats.com/reading-your-own-ekg/) - There's been a great thread on Dr. Wes' blog and the Society for Participatory Medicine's list about patients obtaining and reading their own EKG's. As you can imagine - lot's of pros and cons. A significant difference noted between the right to have the information (tracing) and the ability to interpret the tracing and use it to guide health
- [Open Notes](https://health-hats.com/open-notes-2/) - What information is there about me in my medical record? There's certainly diagnosis, medications, procedures, allergies, treatment plans, referrals, diagnostic test reports (labs, radiology, EKG, pathology). I have more access to that information these days through visit summaries given at the end of the visit and on the different portals my providers have. But what about
- [Engage! Will patient engagement achieve “warp speed” this year?](https://health-hats.com/engage-will-patient-engagement-achieve-warp-speed-this-year/) - Engage! Will patient engagement achieve “warp speed” this year? A fascinating HIMSS LinkedIn thread started by Brad Tritle (@BTritle) on January 9, 2013, with 100 posts through January 23, 2013 by 46 Individuals (31 single post, 15 multiple posts) – 18 pages. The full thread can be found here. I had great difficulty categorizing and
- [The simple form that could save your life](https://health-hats.com/the-simple-form-that-could-save-your-life/) - I've posted often about challenges and frustration using the electronic medical record. Seth Godin (the one blog I follow every single day) wrote this: The simple form that could save your life Medicine is a data processing business. Doctors measure, notice and inspect, and based on the data they collect, make decisions and take action. Alas, despite years
- [Innovation](https://health-hats.com/innovation/) - Innovation: such a pregnant word. Innovation usually accomplishes something pretty basic - a solution to a problem we know or don't know we have, a new or long standing problem. Innovation can be a tool, a process, technology, or a service. Innovation includes widespread use of the solution. Setting diagnostic or clinical treatment aside, the health journey for the whole team primarily involves people:
- [Book review: Far from the Tree](https://health-hats.com/book-review-far-from-the-tree/) - Andrew Solomon’s Far From the Tree: Parents, Children, and the Search for Identity covers stories of diverse caregiver experience; parents with exceptional children: children with deafness, dwarfism, Downs syndrome, autism, schizophrenia, or disability. Others are caring for children who are prodigies, transgender, conceived from rape, or committing crimes. It is a rich and exhausting tome (962 pages)
- [Managing medications: Experience of empowered & engaged partners](https://health-hats.com/managing-medications-experience-of-empowered-engaged-partners/) - Managing medications - the most frequent interaction between health team members - includes both the clinical aspects of our health journey and the behavior of health team members. Medication management that works depends on empowered, informed patients and their caregivers prepared for clinician visits, and engaged, collaborative clinicians skilled at working with activated patients. Unfortunately,
- [Shared Decision Making Month](https://health-hats.com/shared-decision-making-month/) - According the Informed Medical Decisions Foundation shared decision making (SDM) is a collaborative process that allows patients and their providers to make health care decisions together, taking into account the best scientific evidence available, as well as the patient’s values and preferences. March is Shared Decision Making month. I have written extensively about the relationships and behavior
- [Good Government - Office of the National Coordinator](https://health-hats.com/good-government-office-of-the-national-coordinator/) - I frequently write here about access to health information - necessary to just-in-time decision making, tracking status in meeting health goals, coordinating care among your health team - heavily weighted to individual action and team relationships. Effective communication within your finely honed health team is necessary, but not sufficient. You and your team still needs
- [Managing team culture from the inside out](https://health-hats.com/managing-team-culture-from-the-inside-out/) - In January I wrote about the magic lever of organizational culture change (link). Today I'm preparing for a nursing leadership seminar about organizational culture and change for people who lead teams in much larger organizations. While I mostly want to hear from the participants - sharing experiences has much more value than anything I could share - I
- [Thresholds](https://health-hats.com/thresholds/) - We continuously cross thresholds in our journey to best health. A threshold is a beginning, a change - before you weren't, now you are. You cross a threshold when entering a building, a room, a relationship, an experience. Cross a threshold as you park your car, enter a clinic, go for an MRI. Cross a
- [A new threshold - laid off](https://health-hats.com/a-new-threshold-laid-off/) - As you were recently informed, due to the need to reduce operating costs, the Hospital is required to eliminate positions. Unfortunately, your position is one of those affected by this difficult decision.
- [Advocacy - Health Partners](https://health-hats.com/advocacy-health-partners/) - I've participated in several lively discussions about patient advocacy in the past weeks - at the Boston Healthca.mp #hcbos, on the Society for Participatory Medicine (#S4PM) list and with Kelley Connor of Real Women on Health fame. Advocacy has two overlapping worlds - individual advocacy and policy advocacy. I will muse here about individual advocacy in acute care. An advocate is
- [Consumer Engagement - Respect the Horse](https://health-hats.com/consumer-engagement/) - I went to the Duke Wireless Health Conference (See #dukewhc for the tweet thread) in North Carolina this week invited by my friend Dr. Gopal Chopra of Ping MD fame. How to engage consumers more in their health care? As a patient, I bristled at the thought that I wasn't engaged in my care. They don't
- [Give Me My Damn Data](https://health-hats.com/give-me-my-damn-data/) - Making decisions about my best health requires information, wisdom, faith,and luck. Information comes from data, observation, and communication. Wisdom comes from experience and reflection. Faith is trust. And there's a crap shoot in choices, who knows. For me health care decisions is a team sport, best done when I've been able to hand-pick my team
- [Noise](https://health-hats.com/noise/) - Composer, John Cage said, "Wherever we are, what we hear is mostly noise. When we ignore it, it disturbs us. When we listen to it, we find it fascinating." As a change agent in healthcare I find myself filtering the noise. Noise can be a cacophony of voices or motion without much meat. I'm annoyed
- [World Mental Health Day](https://health-hats.com/world-mental-health-day/) - My heart aches - I have loved two people with serious mental health disease. I am a caregiver, I want to be a contributing part of my loved ones' health journeys. Heck, I became a nurse because I find fulfillment in being an intimate part of people's health journey. I felt gnawing inadequacy living with my loved ones
- [Open Notes](https://health-hats.com/open-notes/) - My mission is to increase the sense of balance patients, caregivers, and clinicians feel as they work together towards best health. Working together means relationships and communication. Sometimes I wish I had more face time with the professionals participating in my care. Paradoxically, although my relationships with my professional team are strong, I don't really want more
- [Patient Adherence - Lessons from Recovery](https://health-hats.com/patient-adherence-lessons-from-recovery/) - I attended a planning meeting of the #PatientAdherence Working Group in Newark, NJ on Thursday. The group dedicates itself to patients & health teams members developing an adherence plan for best health outcomes. I began discussion of adherence in a previous post: Developing and adhering to a health plan involves studying population health; evidence-based best practice; collaborative relationships, behaviors, language,
- [Care Coordination](https://health-hats.com/care-coordination/) - According to the September 2012 Institute of Medicine (IOM) report, Communicating with Patients on Health Care Evidence, 97 percent of those surveyed with chronic conditions agreed that their care ought to be coordinated. Yet, only 54 percent said that their care was currently coordinated. If asked is my care for MS coordinated, at first blush I'd say yes.
- [Patient Centered Outcomes Research](https://health-hats.com/patient-centered-outcomes-research/) - I attended the PCORI workshop in DC last weekend. Congress authorized PCORI The Patient-Centered Outcomes Research Institute (PCORI) to conduct research to provide information about the best available evidence to help patients and their health care providers make more informed decisions. PCORI’s research intends to give patients a better understanding of the prevention, treatment and care
- [Leadership of My Health Team](https://health-hats.com/leadership-of-my-health-team/) - I was reading a white paper, An Accountability Architecture for Success, by Wellesley Partners, comparing military success to health care success: Working together as part of a team, applying their specialized knowledge toward a common goal and Define success based on data-driven, results-based metrics; put someone in charge; and hold people accountable. Does this apply to my health care? I have a
- [Scents of Commonality](https://health-hats.com/scents-of-commonality/) - I am the child of holocaust survivors. Recently I'm hearing more about my mother's life as a German Jew in hiding in Netherlands for her teen years. It strikes me as an empowered, engaged ePatient how our different life situations change the meaning of ePatient. In her case, survival was paramount, then boredom and fear. Isn't that
- [Thanks Giving](https://health-hats.com/thanks-giving/) - Thanksgiving is my family's signature holiday. We like to appreciate. This year I appreciate my family - soothes my soul, entertains me, keeps me honest. I appreciate my layoff - affirming my passion for the e-Patient, opening new vistas and sandboxes for me to play in. I appreciate my music - soothes my soul, humbles
- [e-Patient Expert](https://health-hats.com/e-patient-expert/) - When does an #ePatient (empowered, engaged, expert, enabled, equipped, emancipated) become an expert? Expertise=skill or knowledge in a particular area. When does an e-Patient have confidence in their expertise. How does the dynamic change when faced with a professional's expertise? My 4 year old grandson corrected me recently when I suggested that his vegetarian aunt was an herbivore.
- [e-Patient's Health Record. Which DAM data?](https://health-hats.com/e-patients-health-record-which-dam-data/) - Paint me frustrated. In the forums I attend the conversation is almost never about what e-Patients need in their health record. Rather it's about what the vendor and government communities feel is possible given the current state. Many studies exist about adoption of the Personal Health Record (PHR), but none of them address the usefulness of the data
- [So Many Decisions](https://health-hats.com/so-many-decisions/) - So many decisions to make in the journey toward best health. Should I take this medicine, should I have that surgery, should I stay home from work, should I worry, should I use a cane, should I tell my employer or my spouse, should I eat this, should I buy that insurance, should I see
- [Personalized Medicine](https://health-hats.com/personalized-medicine/) - Yesterday, I attended a meeting of the Personalized Medicine Coalition. As defined by the President’s Council on Advisors on Science and Technology, “Personalized Medicine” refers to the tailoring of medical treatment to the individual characteristics of each patient…to classify individuals into subpopulations that differ in their susceptibility to a particular disease or their response to a
- [Magic levers in Medically Induced Trauma](https://health-hats.com/magic-levers-in-medically-induced-trauma/) - You're not alone, we can help. Sigh... such reassurance in those words. Medically Induced Trauma Support Services (MITSS), Inc. is a non-profit organization founded To Support Healing and Restore Hope to patients, families, and clinicians who have been affected by an adverse medical event or unintended outcome. Linda Kenney, the founder of MITSS says: In November of 1999, I found
- [System Magic Levers of  Best Health](https://health-hats.com/system-magic-levers-of-best-health/) - Mutual goals and plans, Accessible evidence, Alignment, Transparent costs, Hardwired continual learning, Financial and human incentive alignment
- [Exercise - the instant magic lever](https://health-hats.com/exercise-the-instant-magic-lever/) - Seems like a no brainer. Exercise, the instant magic lever for best health. Profoundly affects spiritual, mental, and physical health. One of the ways I discovered that I had multiple sclerosis was my inability to stay on a bicycle. I kept falling off when I stopped. Receiving the diagnosis was sobering at best! Sometimes very
- [Rest - another magic lever](https://health-hats.com/rest-another-magic-lever/) - I'm on vacation with my family on Cape Cod, playing, eating, napping, and swimming. For best health we need rejuvenation. All components of individual health: spiritual, mental, and physical, depend on rest and relaxation. These days most healthcare organizations exist in a constant state of change. Change is seldom restful. I suspect organizations need rest
- [Superpowers](https://health-hats.com/superpowers/) - What are my superpowers? What are your superpowers? Love having this conversation with my grandson. Today, he has atomic breath like Godzilla (especially in the morning). I first had this conversation with my son when we first knew he was dying of cancer. His superpower was poetry. i am not things. i am sums of
- [Improvisation](https://health-hats.com/improvisation/) - As an amateur jazz musician I spend 3-6 hours per week working on improvisation. In NY I studied with Al Golladoro, a virtuoso extraordinaire. Now in MA I learn from Jeff Harrington, a saxophone professor from Berklee College of Music, and for the past year I've played weekly in a student combo practicing improv under the direction
- [Improv and Best Health](https://health-hats.com/improv-and-health/) - Why improv and health? Health is unique, of the moment, a journey. A different possible riff every moment. Successful maneuvering the roller coaster of dis-ease depends on religious taking care of what is well with your instrument; on you and your team dynamics; on the predictability and responsiveness of the tune: systems and infrastructure through
- [Improv and Health Leadership](https://health-hats.com/improv-and-health-leadership/) - Why improv and health leadership? Health experience is unique, of the moment, a journey. A different possible riff every moment. The patient, client, consumer (let me use the term consumer for now) expects safe, quality, kind, empathetic care and service from professionals and their organizations-it’s a given. Even when safe, quality, and kind are present
- [Releasing the Inner Improviser](https://health-hats.com/releasing/) - Best health includes improvisation in the relationship between health professionals and those in their care. One picture of improvisation is discretion to customize response and interaction and go off script and track with each individual’s or families journey. Yet the capacity of health professionals to remain up-to-date in their knowledge, compliant with practice and regulation,
- [Magic lever - changing habits](https://health-hats.com/changing-habits/) - One of the magic levers impacting best health is automatically using widely accepted, well tested practices (evidence-based practice). For example hand washing. Seems like a no brainer - washing hands between patients for professionals, before caring for your loved one, after going to the bathroom for everyone. Another is limiting antibiotic use to treat viruses. Also
- [Me? or Populations?](https://health-hats.com/me-or-populations/) - One of the challenges for the health care team - patient, caregivers, and professionals - is arriving at the patient's personal goal of the moment and collaborating toward reaching that goal. I have found myself struggling to differentiate the likelihood of treatment success for a population versus the likely effect for me, my patient, or family
- [Magic lever - Setting a goal for best health](https://health-hats.com/magic-lever-setting-a-goal-for-best-health/) - A best health goal is a milestone in a health journey. These goals can be set individually or collaboratively with a health team. Goals can run the continuum from lose 10 pounds in the next 3 months to make an appointment with a dermatologist to stay alive until my grandson's wedding. The goal can be
- [Health IT 2013 - Turning vision into reality](https://health-hats.com/health-it-2013-turning-vision-into-reality/) - How will health IT make a difference a year from now? Please see the HIMSS blog carnival link for many visions. As we look to the recent past and into the future, the possibilities of health IT are staggering. While visionaries and innovators plot their course, let's think for a minute about the boots on the ground - what does
- [Errors in Electronic Medical Records](https://health-hats.com/errors-in-electronic-medical-records/) - I'm concerned about errors in electronic medical records. I love my technology, I'm an early adopter. I participate in several national initiatives bridging the consumer and health technology - HIMSS (Health Information Management Systems Society) eConnecting with Consumers Committee, Society for Participatory Medicine, the federal Automated Blue Button Initiative, TIGER (Technology Informatics Guiding Education Reform), Patient Adherence Workgroup. I have a PHR
- [Magic lever - resilience](https://health-hats.com/magic-lever-resilience/) - Tragedy is the common unifying force of life and organizations. The more seasoned you are, the more likely you are to have experienced personal and organizational tragedy - a death, diagnosis of serious illness, job loss, legal difficulties, downsizing, loss of a contract, loss of key staff, loss, loss, loss. My daughter-in-law texted me, May the force
- [Best organizational health - recovery](https://health-hats.com/best-organizational-health-recovery/) - Individual best health depends on organizational best health. I spent a valuable portion of my professional career working in behavioral health. Organizations and individuals all suffer tragedies from time to time. Many similarities exist between organizational improvement and personal recovery. For example, an addicted person follows a longstanding behavior without question. The behavior affects the addict
- [Magic Lever - Adherence to Health Plan](https://health-hats.com/magic-lever-adherence-to-health-plan/) - Unfortunately some providers call adherence to a health plan - compliance. This unhelpful label implies singular focus on the patient, as in "they aren't compliant with taking their meds". The ability to develop and adhere to a health plan is probably the most complex magic lever of best health. Developing and adhering to a health plan involves
- [Magic lever - grandchildren](https://health-hats.com/211/) - My grandson, age 4: Opa (that's me) go get your cane, let's play in the yard. Opa: Sure, what should we play? Grandson: Jungle animals Opa: What animal should I be? Grandson: One with balance. :) Why do I feel so wonderful hanging out with my grandchildren? My heart is open, I laugh. Where else
- [Magic Lever - Trust](https://health-hats.com/magic-lever-trust/) - Best health builds on trust. Trust in yourself, trust in your health team, trust among your team, and trust among the leadership of your health organization. Health is possible without trust, but best health is not. Trust is like the golden rule: simple, obvious, painstaking to attain. Trust contains self love, an open heart, self-confidence, vulnerability, fairness,
- [Sleeplessness](https://health-hats.com/sleeplessness/) - “Care keeps his watch in every old man’s eye, And where care lodges, sleep will never lie.” ― William Shakespeare, Romeo and Juliet My perspective on sleeplessness has changed over time. Once it was my enemy and I fought it tooth and nail. Now it's my companion, familiar, irritating, and intriguing. I go to bed early, fall
- [Caregivers and Providers](https://health-hats.com/caregivers-and-providers/) - Yesterday, Peter Elias, MD, fellow member of the Society for Participatory Medicine (www.participatorymedicine.org) asked us to offer questions that caregivers may have of providers as they care for their loved ones with cancer. I'm recall our experience caring for our son, Mike, when he was being treated for and dying of melanoma. Mike was a young
- [Sharing the Wealth: Mentoring Newbies to Advocacy](https://health-hats.com/pod184/) - Where do veteran advocates point people new to advocacy for skills, resources, and research? What are trusted resources? 15 interviews from Healthe Voices 22.
- [Thanksgiving 2022: Status, Activities, Musings](https://health-hats.com/pod183/) - Time for gratitude and appreciation for what is. Update on Health Hats, the person, family, music, connection, and activism. New feature: Nuggets from the Mine
- [Be the Change. Move at the Speed of Trust.](https://health-hats.com/pod177/) - Chat with Isabelle Barbour, Truth teller Consulting, about partnerships, community advocacy, privilege, disparities, trust, and being your best self.
- [Get along. Get it done. Governance](https://health-hats.com/get-along-get-it-done-governance/) - If the group or project doesn't seem worth your time or smells fishy, check governance. Change is tough without understanding who makes decisions and how.
- [Risk Adjustment, Equity, Movement. Jumping in the Deep End](https://health-hats.com/pod160/) - Why measure health outcomes? What information comes from outcome data? What action does the information motivate? How do disparities figure in? Why risk adjust?
- [Camino de Santiago 2022: Pilgrimage with Angels](https://health-hats.com/pod165/) - Lost my wheelchair charge on Day 1. OMG. Busted. Until angels stepped in. Grateful, grateful, grateful
- [Apples to Apples, Risk Adjusted for Cost & Quality of Care](https://health-hats.com/pod172/) - Cost & quality. Compare & risk adjust. Measurement that serves people is complex, fraught, in its infancy. Chat with Dr. Bob Phillips to make some sense of it.
- [BUILD  - Self-Confidence, Agency, Engagement in Young Adults](https://health-hats.com/pod174/) - BUILD provides opportunities for young adults to find their footing and self-confidence through entrepreneurship. We need them. Betsy Neptune tells us more.
- [Playing Baritone Saxophone with Disabilities. Can Be Done!](https://health-hats.com/pod176/) - Music in my life. Adjusting to changing abilities with my bari sax. An experiment in multimedia sharing. Listen, watch, read. Best to watch the YouTube video.
- [Generation Patient. Hope for Young Adults Living to be Able](https://health-hats.com/pod178/) - Building a powerhouse advocacy org for young adults with chronic conditions, Sneha Dave shares her path & vision: skill building, peer support, events, policy.
- [Leadership in a Health Center. Managing Manageable Stress.](https://health-hats.com/pod179/) - Dr. Kiame Mahaniah, CEO, values his FQHC staff; feels for pts' life challenges; understands what he can control & can’t; & weeps for under-realized potential.
- [Health is Fragile: 26 Stories](https://health-hats.com/pod180/) - 26 patient advocates from the Healthe Voices 2022 conference describe the moment when they realized health was fragile. Snapshots of diverse lived experiences.
- [Mighty Casey Quinlan Unplugged #3](https://health-hats.com/pod181/) - Mighty Casey Quinlan, Healthcare Is Hilarious continues to cope with her breast cancer #MetsParty. We co-produce when her audience clammers for news and wit.
- [Recognizing Success in Advocacy: Stories on the Ride.](https://health-hats.com/pod182/) - HealtheVoices22 patient advocates describe how they recognize success in their advocacy. "When I affect 1 person's life." Snapshots of diverse lived experiences
- [Emerging Adults with Mental Illness: #1 Series Introduction](https://health-hats.com/pod185/) - We need our emerging adults healthy in spirit, mind, body. How can we learn more about their exploding mental illness? Start with people with lived experience.
- [Lived Experience with Psychosis: #2 Emerging Adults with Mental Illness](https://health-hats.com/pod186/) - Episode #2 Emerging Adult living with Schizophrenia, finding help, using a toolbox to cope, giving back as peer specialist, leading with Students with Psychosis
- [2023 AI Holiday Letter, Oh My!](https://health-hats.com/pod187/) - Since AI dissemination exploded in 2022, I created my holiday letter using a variety of AI apps. May you all have adventures, rest, and inspiration. Love ya.
- [Hope for Mom. #3 Emerging Adults with Mental Illness](https://health-hats.com/pod188/) - #3: Erika Blair, proud of son, Emeka Chima. Found professionals with lived experience, integrated teams, positive support & a sense of hope from other parents.
- [Crossing Thresholds: #4 Emerging Adults with Mental Illness](https://health-hats.com/pod189/) - Annie Schneider with Bipolar II, experiencing abrupt and slow simmering transitions from home, hospital, school. Develops agency, control, and trust. Powerful!
- [Belonging in School: #5 Emerging Adults with Mental Illness](https://health-hats.com/pod190/) - Matt Neil, teacher, offers a hopeful story. Not focusing on mental health per se but on belonging and inclusion in a typically lonely time – high school.
- [Primary Care: #6 Emerging Adults with Mental Illness](https://health-hats.com/pod192/) - Discover how PCP Dr. Bonnie Engelbart manages the referral maze & limited resources when caring for emerging adults with mental illness.
- [The Mighty Mouth Goes Quiet, Casey Quinlan, Mashup 2021-22](https://health-hats.com/pod193/) - Mid-March,Casey didn’t often sound lucid or humorous. She spun a yarn and offered wisdom sporadically. Grateful for her impact on the patient-caregiver movement
- [Emergency Care: #7 Emerging Adults with Mental Illness](https://health-hats.com/pod194/) - Dr. Joel Hudgins muses on up and downstream changes to Peds ED for emerging adults with mental illness. Higher numbers & acuity, too few beds, services, & staff About the Show Welcome to Health Hats, learning on the journey toward best health. I am Danny van Leeuwen, a two-legged, old, cisgender, white man with privilege,
- [24/7/365 Access: #8 Emerging Adults with Mental Illness](https://health-hats.com/pod196/) - COAST, a 24/7/365 access program in upstate NY, offers access to med-assisted treatment & wraparound services for substance use & mental health concerns
- [Serve, Plant, Build, Inspire #9 Emerging Adults w Mental Illness](https://health-hats.com/pod197/) - Exploring Youth Clubhouses, drop-in centers for youth in recovery from/at risk for substance use disorders, focusing on access, partnerships, & peer support.
- [Research Community Link: #12 Emerging Adults w Mental Illness](https://health-hats.com/pod201/) - Dr. Motley studies emerging black males & females with mental illness compounded by racism & violence. They need support systems & a chance for upward mobility.
- [PCORI Research Funding: #13 Emerging Adults w Mental Illness](https://health-hats.com/pod202/) - PCORI’s Dr. Chue brings to light the complexities & challenges of conducting research, engaging stakeholders, and implementing findings in real-world settings.
- [Health Economics: #14 Emerging Adults w Mental Illness](https://health-hats.com/pod203/) - Dive into the intricate web of conflicting healthcare incentives. Dr. Wang explains how health economics guides resource allocation for better outcomes.
- [PATIENTS Program: Building Community Research Partnerships](https://health-hats.com/hhp205/) - Rodney Elliott discusses the PATIENTS Program, a community-research partnership for health equity. The podcast explores authenticity, engagement, & growth.
- [PATIENTS Program: Building Community Research Partnerships](https://health-hats.com/pod205/) - Rodney Elliott discusses the PATIENTS Program, a community-research partnership for health equity. The podcast explores authenticity, engagement, & growth.
- [#11 View From Medicaid:  Emerging Adults w Mental Illness](https://health-hats.com/11-view-from-medicaid-emerging-adults-w-mental-illness/) - Dr Herndon, former Medicaid CMO: challenges faced to improve mental health care for emerging adults. Better support systems for their transition to independence
- [Balancing Motherhood, Community, Trust, Money, & Sickle Cell](https://health-hats.com/pod210/) - Personal growth living with a chronic illness, sickle cell, the importance of open communication, building a supportive community, & advocating for oneself.
- [Brain Fertilizer, Soul Points, and a Bucket of Pain](https://health-hats.com/pod212/) - Pathways & switches of pain affect well-being & productivity. Amy Baxter, MD. explores recent insights about managing pain and learning coping mechanisms.
- [21 Years Since Son, Mike Died. Superpower: Accepting What Is](https://health-hats.com/pod211/) - Our son. Mike, died 21 years ago at age 26. Wasn't born with a tattoo telling him how long he had to live. Best spiritual health of his life. Left me a sign.
- [Episodes You Might Have Missed](https://health-hats.com/hhb208/) - Apologies for failing to update readers on several months of podcasts with a list of episodes to choose from. Planning a revised production schedule.
- [Opa Heaven: Titles, Maglevs, Hats, the Universe, Snarkiness](https://health-hats.com/pod206/) - Danny & Oscar muse about tension between thumbnails & descriptions, superconductors & the environment, health hats origin, life & bad habits, like snarkiness.
- [Bonus Episode 2: Apps, Beehives, and Bobbleheads](https://health-hats.com/pod204/) - Journey in adlibbed speaking, video editing, business growth strategies, & the ups/downs of personal life, including music & health challenges. Bobbleheads, too
- [Introducing Health Hats Patreon Page](https://health-hats.com/pod195/) - Introducing you to my new Patreon page so that I can earn some revenue to help me keep the lights on. Fans can pay a $small amount each month for bonus rewards.
- [First-Responders and Research. Building a Bridge.](https://health-hats.com/pod175/) - Research matters to people where they live, work, play, worship, and learn. What questions do they ask? Will Parente, a bridge between firefighters and research
- [Cultivating a Podcast. 10 Years Now. Still a Hoot and a Half.](https://health-hats.com/pod173/) - 10 years of blogging and podcasting. Planting, fertilizing, growing, harvesting. Questions asked and answered about process, motivation, and future direction.
- [50 and 70. Connection and Age. Spiritual Strength.](https://health-hats.com/pod171/) - 2-legged, cisgender, white man of privilege turning 70 enjoying life with friends of 50+ years. Still kicking-sort of-still enjoying life. Intentional families.
- [Family, a Magic Lever of Best Health. 3 Danny van Leeuwen's](https://health-hats.com/pod170/) - Introducing 3 generations of Danny van Leeuwen's. Inclusive, blood, intentional family lore. Spiritual health can come from family. From the Holocaust to today.
- [Collaborative Notes, Engaged Partners, Fewer Errors](https://health-hats.com/pod169/) - Patients, care partners & clinicians can reduce record errors with collaborative notes. Dr. Peter Elias shares his note-writing with collaborative partners.
- [Garbage In Electronic Data is Faster Garbage](https://health-hats.com/pod168/) - How can medical document errors become easy to fix, everywhere the error lives, & fit in the workflow? Virginia Lorenzi and HL7's Patient Empowerment Workgroup.
- [Burnout, Healthy Habits, American College of Lifestyle Medicine](https://health-hats.com/pod167/) - An epidemic of burnout among health workers. Learn about the American College of Lifestyle Medicine's approach: 6 pillars & 3 teaching axioms from Dr Robyn Tiger
- [Patient Advocates on National Boards: Mind the Sausage](https://health-hats.com/pod163/) - Engaging patients differs depending on the role. Those on national Boards lead, strategize, advocate, communicate. Adam Thompson is on the Board of NQF. Listen in.
- [Collector of stories. Channel of voices for safety & equity](https://health-hats.com/pod110/) - Patient caregiver activist, Nikki Montgomery, brings voices to healthcare Board of Directors for safety, access, and equity. Orientation, dashboards, mentorship
- [Decision Aids: Tools to Support Conversation About Choice.](https://health-hats.com/pod161/) - Decision aids with Dr. Daniel Matlock. Complexity of decisions, agency of decision-makers, timing, the black box, answering questions as they arise.
- [In the Wild: Data to Info to Action & Back & Again #158](https://health-hats.com/pod158/) - Data is not info is not action. Data, cooked into Info could lead to action. People add context, values, culture, experiences, history, biases to data and info.
- [Feb 28th Rare Disease Day: Zebras and Equity #159](https://health-hats.com/pod159/) - Rare diseases as a health equity group. Rare doesn't mean never. Commonalities & differences.Learning from tiny populations. Chat with Doug Lindsay
- [2021 Holiday Letter: Trust](https://health-hats.com/pod105/) - Overflowing with gratefulness in the New Year. Sobered by grief for 1000s of lives lost each day. Theme this year: Trust. Read, listen, or watch this episode
- [Power of People. Pause and Trust.](https://health-hats.com/pod106/) - Designing clinical trials for and with people with Traumatic Brain Injury. Lynne Becker looking forward over time, not backward. Building a business.
- [A 15-Minute Advantage](https://health-hats.com/pod107/) - Survival mode in a bubble of privilege until called to more radical action. 15-minute advantage, active listening, sharing control, critical thinking and music
- [#1 Train each other how to treat each other](https://health-hats.com/pod108/) - Listen to Regina Greer-Smith, pioneer and master of research without fear. Strong women leading research. Engagement, dissemination, implementation.
- [The Equitable Jab Blues - Word Jazz](https://health-hats.com/pod109/) - Going a bit nuts, a ray of hope, finding the vaccine, inequities galore. Get the vaccine, keep wearing your mask, physically distance, keep the faith. Best listened to.
- [Promotoras, Community Health Workers Rule!](https://health-hats.com/pod112/) - From the community, trusted, lived experience, life literate, bridging, valued & valuable. Russell Bennett shares his experience with Promotores and Promotoras.
- [Trust is Complicated: Person-First Safe Living in a Pandemic Part 3](https://health-hats.com/pod113/) - Trust in COVID19 depends on context: circumstances, identity, tolerance for risk, comfort with uncertainty, critical thinking & more. Introducing a trust label.
- [Reading the Room. Lessons from the Clowns. Take 2](https://health-hats.com/pod114/) - Learn from the clowns. Embrace failure, take a deep breath, laugh, cry, engage. Revisit chat with Jason Stewart from Laughter League at Boston Children's Hospital.
- [Covid-19 Testing. Still Complicated.](https://health-hats.com/pod115/) - People are stressed, tired of the pandemic, more focused on vaccines, fewer people get tested. A year later we hear the same questions about COVID-19 testing.
- [The Last Mile. From the Vial to the Arm.](https://health-hats.com/pod116/) - Where are you and your team on the continuum of engagement and partnership with patient-caregivers? Partnering is a long-term relationship. Take one more step.
- [Diverse Abilities for Our Future](https://health-hats.com/pod117/) - Rich with abilities, accomplished businessperson, autism advocate, Jimmy Clare uses mentoring and coaching well, and grabs opportunities as they appear.
- [Destination: Best Health. Life Goals. Symptom Goals.](https://health-hats.com/pod118/) - North Star of personal and symptom goals help us operate at peak performance. Stay Well. Get Over It. Live the Best Life Possible. Try it. Makes a difference.
- [Fearless Medical Coach, Storyteller. Getting to Yes.](https://health-hats.com/pod119/) - We are not our behaviors, diagnoses, symptoms, but tellers of our many stories & owners of our health. Wisdom from fearless master medical coach, Siri ben Arzi
- [Trusting News. Palatable, Digestible, Repeatable, Regrettable?](https://health-hats.com/pod121/) - Trust in journalism. Still complicated. Do we value connection over logic? Are we persuadable? What is the mix of facts, context, opinions. Learn from Joy Mayer
- [Apples-to-Apples? Person-First Engagement & Power Shifting.](https://health-hats.com/pod122/) - The powerful are not homogenous. Person-first (meet people where they are) can help us better strategize and advocate for partnership and shared decision-making
- [Superpowers. Guessing That I’m Part of God.](https://health-hats.com/pod124/) - Celebrating generational milestones. Reaching life goals. Surviving and thriving with superpowers.
- [Walk the Talk. Person-First and Co-Production.](https://health-hats.com/pod125/) - Taking Person-First Safe Living in a Pandemic on the road with Health Communication students at The College of NJ leading to Care Against COVID on Instagram
- [Co-Production. Power. Change. Worth the Risk.](https://health-hats.com/pod126/) - How can co-production help get research findings into practice and life? Consider researchers' and public's capacity, willingness, and opportunity to co-produce.
- [Healthcare is Hilarious. Mighty Casey Quinlan.](https://health-hats.com/pod127/) - Still hilarious traveling down the tube of metastatic cancer? Maybe bemused, bewildered, be tired. Definitely not dead yet. Mighty Casey keeps us up-to-date.
- [Internal Fire of Best Health: Intuition, Mystery, Spirit, Soul](https://health-hats.com/pod128/) - Nurture spirit for best health. Death, dying, grief, trauma weaken and ++ connections, music, art, mindfulness, gratitude strengthen the spirit. A mystery indeed.
- [Honor Supporting Cast, Stars of Disabling Conditions. Part 1](https://health-hats.com/pod130/) - Terri Tomoff wrote The Focused Fight, bringing a 2-year-old through 5 cancers over 20 years. We hear from whole family. Each star & supports. Help the Helpers.
- [Honor Supporting Cast: Part 2. Want to Help? Just Do It.](https://health-hats.com/pod131/) - More of the Tomoff 20-year odyssey with 5 rounds of cancer. Open your heart to community. Bottle empathy. Embrace post-traumatic growth. Succession planning.
- [Healthcare is Hilarious. Continuing Mets Saga. Hospital. Home.](https://health-hats.com/pod132/) - Mighty Casey Quinlan's #MetsParty returns from the hospital. Worth it. Took control. Alive, cooking, eating, working. Piss and vinegar. Pasta.
- [Life without sax? Adapt to changing abilities.](https://health-hats.com/pod134/) - Abilities changing. Can’t play my horn. Acute pain on top of chronic pain. Need new solutions. Right-sizing virtual and in-person visits. Maintain optimism.
- [Systemic Disparities & Inequities in Maternal Health. Still?](https://health-hats.com/pod133/) - US worse in maternal mortality among rich nations. Black women 2.5x more likely to die than white women. Drs. Whitt & Masinter discuss fragmented care and info.
- [Self-love in Gender Identity, Transitioning](https://health-hats.com/pod135/) - In my youth, sex roles; today, gender identity. While rich with LGBTQ+ in my families, I know so little. O Horvath generously walks us through their transition.
- [Recharging Batteries with Professionalism. Who Knew?](https://health-hats.com/pod136/) - Release endorphins in presence of professionalism & diversity. Open heart, boost learning, respect, action. Don’t waste time, give hurt dignity. Care & artistry
- [Deconstructing Grief](https://health-hats.com/pod138/) - Opening my heart. Grieving the loss of Robert Doherty, loss of others, loss of self. Coping with life. Doing our best. No regrets.
- [Communities Advancing Equity through Shared Measurement](https://health-hats.com/pod137/) - Communities take action to improve. Shared measurement lights the way. Simple, routine, effective. Lessons learned from the field with Tania Dutta & Uma Kotagal
- [Normal, a Dryer Setting with Mighty Casey Quinlan #139](https://health-hats.com/pod139/) - Altered states. Normal is a dryer setting. Adapting to life. Patient hacking. With the brilliant, hilarious, passionate Mighty Casey Quinlan. Life is good.
- [Find Value: Keys Lost in Dark Alley. Look Under Streetlight?](https://health-hats.com/pod140/) - Person-first measurement of value in healthcare. Chat with Jennifer Bright @IVI_Health. Problem-solving led by people making clinical decisions. Check it out.
- [Legacy and Succession Planning for the Seasoned #141](https://health-hats.com/pod141/) - Are you a patient-caregiver activist winding down? Let's chat and hand off to younger people feeling their way & support them as they perceive their needs.
- [Crises: Opportunity for Children to Cope #142](https://health-hats.com/pod142/) - The entire family, experts in their lives, strains to recover from the grief of addiction-children, too. Check out Sarah Cloud’s series: Mama and Papa Paca.
- [Plenty of Poetry– Past and Present #143](https://health-hats.com/pod143/) - Take a brief break with several six-word caregiver poems, like 'Pillow, Pills, Poop, Piss, and Pain' plus a poem about me from The Good Listening Project.
- [Innovation, Local Persistence #144](https://health-hats.com/pod144/) - Innovation is not like switching on a lightbulb for the world. Rather it's local iterative, persistent steps. Thoughts from the Patient Experience Symposium.
- [Cost, In Any Other Language #145](https://health-hats.com/pod145/) - What does healthcare cost mean? I can’t explain it. Listen to Matt Pickering from Nat Quality Forum help us out. Consider serving as a patient rep with NQF.
- [No Dip Without a Rise #146](https://health-hats.com/pod146/) - As a musician. I’ve gone from “can’t do this” to “need to be better.” If it was health, I’d advise, 'you never get better in a straight line. No dip, no rise.'
- [Belonging, Intersection of Diversity, Equity, and Inclusion #147](https://health-hats.com/pod147/) - Duane Reynolds of the Just Health Collective reflects on a layered approach to combating racism. Individuals drive organizations that live within systems.
- [Continuously Learn What Works #148](https://health-hats.com/pod148/) - Health care contains problems needing fixed. How can we continually learn from experience, accumulate that experience to inform future choice-making and action?
- [Community Engagement – Harmonizing to the Same Tune #150](https://health-hats.com/pod150/) - Dr. Kirsten Meisenger from the Cambridge Health Alliance engages long-standing community partners in telehealth usability with joy and grace. Deep.
- [Embedded Researchers-Translators, Connectors, Stewards #152](https://health-hats.com/pod152/) - Embedded researcher, Matt Hudson. Partnerships, self-reflection, values, equity. Treat illness in service of community prosperity. An instruction manual.
- [Coaching for Peak Performance and Best Health - 2021 #153](https://health-hats.com/pod153/) - Coaching, critical to my success in life, art, politics, advocacy. Still need to do my own work & make choices. Listen to a session with one of my coaches.
- [Sustained Community Engagement-Rousing, Nimble, Complex #155](https://health-hats.com/pod155/) - The odyssey of sustained community engagement at Cambridge Health Alliance with Janice John and Jamila Xible. Cross-pollination of expertise and employment.
- [Health Choices. Knowledge + Behavior. Your Life Depends on It.](https://health-hats.com/pod157/) - Healthcare decisions affect you and others. Complicated for everyone. Knowledge waiting to be implemented. Join this chat with Dr. Talya Miron-Shatz. Blog subscribers: Listen to the podcast here. Scroll down through show notes to read the post. Subscribe to Health Hats, the Podcast, on your favorite podcast player Please support my blog and podcast. CONTRIBUTE
- [Person-First Safe Living in a Pandemic #1](https://health-hats.com/person-first-safe-living-in-a-pandemic-1/) - Part 1: A person-first approach for researchers & content creators that helps people find trusted guidance to answer questions about Covid-19 living safely.
- [Person-First Safe Living in a Pandemic: Part 2: Finding Guidance](https://health-hats.com/pod103/) - How do regular people find evidence-informed guidance to help make decisions about safe living in a pandemic? Questions answered when needed in a useful manner?
- [Camino de Santiago, Spain. Pilgrimage of sounds.  #20 & 156](https://health-hats.com/pod156/) - I found myself on a pilgrimage of sounds. Disabled. Left out. Mobile. Podcasting in Spain from my wheelchair in 2019. Portugal Camino next. Anything different?
- [Illness-Induced PTSD. Not Only Patients](https://health-hats.com/illness-induced-ptsd-not-only-patients/) - 2-mo coma. Liver transplant. Brain surgery. 6-mo hospital. PTSD for sure. What about caregivers, family, docs, nurses? What's the impact of control and dignity?
- [Sound and Noise. Senses and Voice. A Reprise. #19 & 154](https://health-hats.com/pod154/) - Revisit 2019 travel to Spain with disabilities. A guest in other people's lives. Differentiating between sound and noise. Heightening senses, expanding voice.
- [Telling Stories for Different Brains #151](https://health-hats.com/pod151/) - Turn-around. Interview of Health Hats by Craig Constantine entitled, Rich, about my podcasting process. A ton of work to keep it fresh. Ruthless editing.
- [Family: Open Heart, Unconditional Love, Boundaries  #149](https://health-hats.com/pod149/) - My son. Mike, died 19 years ago, age 26. Wasn't born with a tattoo telling him how long he had to live. Blood, married, intentional families. Love & boundaries
- [Accessible Yoga: Honor Your Body](https://health-hats.com/accessible-yoga-honor-your-body/) - Meet us where we are. Trust yourself. Honor your body. Take small steps forward. Adjust as needed. Connect to others taking small steps. Share what works for u
- [Help the Helpers in Crisis](https://health-hats.com/help_the_helpers_in_crisis/) - Crisis: the point where a person finds themselves unable to cope. In these times of COVID, racial injustice, people are desperate for support in their lives
- [Breaking for a Week. Not Broken.](https://health-hats.com/breaking-for-a-week-not-broken/) - Taking a week off while I shift from one web host to another. Plus, I need a break. 129 episodes in 132 weeks (2 1/2 years). Returning next week in full glory. Blog subscribers: Listen to the podcast here. Scroll down through show notes to read the post. Please support my podcast. CONTRIBUTE HERE Episode
- [Breaking for a Week. Not Broken.](https://health-hats.com/pod129/) - Taking a week off while I shift from one web host to another. Plus, I need a break. 129 episodes in 132 weeks (2 1/2 years). Returning next week in full glory.
- [Improvisation is Live Inspiration. Keep Trying.](https://health-hats.com/pod120/) - Approaching my health as improv. Some stuff work at the moment; some don’t. Listen, learn, appreciate. There are no mistakes. We are where we are, trying again.
- [Stories, Not Noise, for You - the CEO of Your Health](https://health-hats.com/stories-not-noise-for-you-the-ceo-of-your-health/) - CEO of Your Health learning on the job. Fashioning stories to inform a fluid care plan we can use and manage from the noise of data. Sharing it with our teams
- [PTSD. We Gotta Get Out of This Place.](https://health-hats.com/ptsd-we-gotta-get-out-of-this-place/) - The next epidemic wave: Post-Covid PTSD. Survivors, family, health workers. Connect, manage stress, build small positive habits, listen. It's a family affair.
- [A Flash from the Past - A Flippity Do Dah, A Flippity Day](https://health-hats.com/pod111/) - Change of pace. In 1971 I wrote a story in the style of Mark Twain while traveling from Detroit to Zihuatanejo, Mexico. A birthday gift for Oscar.
- [Help the Helpers! Care for Healthcare Workers Now!](https://health-hats.com/help-the-helpers-care-for-healthcare-workers-now/) - Limited capacity to care during COVID-19. Not beds or equipment, but caring people. Many burning out HCWs throwing in the towel. Learn about Project COPE
- [OpenNotes - A Gold Mine of Community Organizing](https://health-hats.com/opennotes-a-gold-mine-of-community-organizing/) - Transparent communication in healthcare. Connection, trust, control. Research to practice. Change management. Community organizing. Liz Salmi tells her story.
- [Health Inequities and Racism: Doing My Own Work.](https://health-hats.com/health-inequities-and-racism-doing-my-own-work/) - Diversity within diversity. Research informs action. Planting seeds of co-learning & co-production. Doing my own work to address health inequities and racism.
- [Engage! Community Organizing, Coalitions & Infrastructure](https://health-hats.com/engage-community-organizing-coalitions-infrastructure/) - Healthcare activists need communities to affect change. Considering public-private partnership with NCQA's Digital Measurement Community with Ben Hamlin
- [Healthy Homes Advocacy](https://health-hats.com/healthy-homes-advocacy-podcast-002/) - When we feel strong enough or mad enough, we advocate to improve health for someone, sometime. What lessons can we learn from a master at advocacy?
- [OB Nurse. Cannabis Nurse.](https://health-hats.com/ob-nurse-cannabis-nurse/) - How do our front-line workers stay sane? How do moms manage blurring of trauma & hope? Grateful for nurses like Jodi Churchill Chapin, OB & Green Nurse.
- [Dementia, Covid-19, Oh My](https://health-hats.com/demntia_covid19/) - New normal in dementia care Memory Units in the age of Covid19. Social distancing? Right. Live in the moment. Honor the caregivers. Help the helpers.
- [Superpower: Accepting What Is #1 & #99](https://health-hats.com/superpower-accepting-what-is-1-99/) - My son. Mike, died 18 years ago at 26. Wasn't born with a tattoo telling him how long he had to live. Best spiritual health of his life. Left me a sign.
- [Questions from a Mild Covid-19 Case](https://health-hats.com/questions-from-a-mild-covid19-case/) - The nonstop flow of info about COVID19 often doesn't answer questions to help me stay healthy, not dead. Listen for the questions of this person with mild coronavirus. Blog subscribers: Listen to the podcast here. Scroll down through show notes to read the post. Subscribe to Health Hats, the Podcast, on your favorite podcast player
- [Everyone-Included Research](https://health-hats.com/everyone-included-research/) - Person-included research, co-production, tragedy, grief, health equity, and relationships in life and research. Chat with Amy Price of Stanford and BMJ
- [Failure Ink](https://health-hats.com/failure-ink/) - Amazing includes failure, frequent failure. Hearing about a failure, we naturally ask, 'and then what happened? What did you learn? What eventually worked?'
- [Minister to Community Spirit](https://health-hats.com/minister-to-community-spirit/) - Neely Williams, change agent, pastor, attending to communities' spiritual and physical health through engagement and profound listening.
- [Safe Living in a Pandemic – Help!?](https://health-hats.com/safe-living-in-a-pandemic-help/) - Why can't we fill in personal data and routine community COVID stats into a web form and calculate our risk of infection and mortality? Anyone working on it?
- [Chronic Pain. A Jealous Narcissist.](https://health-hats.com/chronic-pain-a-jealous-narcissist/) - Acute pain consumes all. When we can listen and align, Penney Cowan’s Amer Chronic Pain Assoc helps the whole team: the person with pain, family, and clinician.
- [Unintended Consequences](https://health-hats.com/unintended_consequences/) - We all create a wake: the downstream turbulence of us. Treat unintended consequences as welcomed guests. Catalog & learn from them. Brief episode with Health Hats
- [Win a Lottery Without a Ticket](https://health-hats.com/win-a-lottery-without-a-ticket/) - Try massive numbers of solutions. Most won't work. Some will. Try for 2 weeks. Doesn't work? Try something else. Inspiration about chronic pain from Dr. CJ Rhoads
- [What's Your Superpower?](https://health-hats.com/whats-your-superpower/) - Accept what is and move on. Lessons from sand travel, adapting to shifting abilities, and gratitude. A brief episode with Health Hats.
- [Chronic Pain. Research to Action](https://health-hats.com/chronic-pain-research-to-action/) - Jessica DeFrank about chronic pain, reducing opioid use, research to action, risk tolerance, technology pre- and post-Covid, informed decision-making & families
- [Sifting through the Sand: Chronic Pain, Tech, Health Equity](https://health-hats.com/sifting-through-the-sand-chronic-pain-tech-health-equity/) - Chronic pain, medical choices, tech, & health equity converge in a free-wheeling conversation with the Patient-Family Advisor Network chronic pain task force.
- [Blessings in Chronic Pain. Patient, Doctor, Plan.](https://health-hats.com/blessings-in-chronic-pain/) - Chronic pain touches much. Art, science, never-ending experiment. Doctor, patient, plan. Gratifying when it works. Chat with Dr. David Edwards, pain specialist.
- [Patient Family Advisors. Back 2 Basics](https://health-hats.com/patient-family-advisors-back-2-basics/) - Engage academia and hospitals with patient family advisors. Not rocket science, not window dressing. Basic stuff, yet a challenge. With James Harrison at UCSF.
- [Infodemiology. Too much. Not enough.](https://health-hats.com/infodemiology-too-much-not-enough/) - An overabundance of info makes it difficult to find trusted sources, reliable guidance when needed, in manner, context, & useful format. With Janice McCallum
- [Build It and They Will Come?](https://health-hats.com/build-it-and-they-will-come/) - Finding trusted evidence-informed guidance in worlds of chronic illness, clinician, researcher. Inclusion, equity, choices, community. With Cherie Binns
- [CDS. Listen, Learn, Informed Choice.](https://health-hats.com/listen-learn-informed-choice-cds/) - Scaling patient-caregiver engagement in CDS (Clinical Decision Support). Learning health systems. Interview with Lacy Fabian at MITRE and Ed Lomotan at AHRQ
- [Gratitude in Loss. Together.](https://health-hats.com/gratitude-in-loss-together/) - Gabriel Nathan raises awareness about suicide prevention and spreads a message of hope with his 1963 Volkswagen Beetle, Herbie the Love Bug replica 
- [The Silence Between the Notes](https://health-hats.com/the-silence-between-the-notes/) - Gabrielle Pitman, singer-songwriter, Musicians Can Thrive podcaster, lives between the notes and advocates for people in the music life during Covid-19 days.
- [A Gift That Keeps Giving](https://health-hats.com/a-gift-that-keeps-giving/) - Regina Holliday, a learning dynamo who takes her skills - painting, connection, spirit, whatever – to catalyze whoever touches someone she has touched.
- [Imagine: Leverage Abilities. Access Better Solutions.](https://health-hats.com/imagine-leverage-abilities-access-better-solutions/) - Create an inclusive, accessible co-working space for aspiring entrepreneurs with disabilities, small startups, or groups that serve the disability community.
- [Inspire Me Once, Inspire Me Twice](https://health-hats.com/inspire-me-once-inspire-me-twice/) - People living with a disability are used to the world able to hurt us or bring us down, whether from judging or funky body and not behaving in an optimal way.
- [Dementia Friendly City!](https://health-hats.com/dementia-friendly-city/) - Finding a dementia-rich life when dementia comes a-knocking. Self-care and sense of humor. Interview with Jill Johnson-Young about a Dementia-Friendly City.
- [Share the Stories. Help the Helpers.](https://health-hats.com/share-the-stories-help-the-helpers/) - Stories are mirrors. Our stories matter. Tell your story as much as you can. Share the tragedy. Share the silver lining. Honor the caregivers. Help the helpers.
- [Temporarily Able-Bodied People. We’re in This Together.](https://health-hats.com/temporarily-able-bodied-people-were-in-this-together/) - Covid19. Sad, angry, grieving. No grief without love. People with different abilities have a 15-min jump on the temporarily able-bodied. Connect, learn, appreciate.
- [Kind Re-Equilibration in the Age of Coronavirus](https://health-hats.com/kind-re-equilibration-in-the-age-of-coronavirus/) - Night terrors - apocalyptic meets pathologically optimistic. Testing and tracing. Re-equilibration. Self-care. 
- [The Zen of Relationship-Centered Measurement and Engagement](https://health-hats.com/zen_relationshipcentered_measure/) - Commit to improving what’s vital locally. Improve more than measure. Engage people at the center. Focus on relationships. Measure consistency & sustainability. Exercise weak muscles.
- [Mind Body Spirit. Empathy and Social Justice.](https://health-hats.com/mind-body-spirit-empathy-and-social-justice/) - Traditional indigenous views of health melding with Western medicine. You might see a shaman,and pick up some meds from your doctor on your way to the church
- [Peer Support: Patience and Kindness](https://health-hats.com/peer-support-patience-and-kindness/) - Everybody possesses innate wisdom about themselves. I don't know the answer to your question, but I believe that you know the answer to your question.
- [A Zebra, Not a Horse: Rare Patient Voice](https://health-hats.com/a-zebra-not-a-horse-rare-patient-voice/) - Rare Patient Voice: Gateway to paid Patient Advocacy. Diagnosis-based experience brokers. Interview with Wes Michael.
- [Bioethics: Autonomy. For Me, On Behalf of Me.](https://health-hats.com/bioethics-autonomy-for-me-on-behalf-of-me/) - Bioethics includes 4 principles. Ken Goodman spoke on 2: nonmaleficence (do no harm), beneficence (for me, on behalf of me). When you peel back layers, bioethics are not black and white, rather shades of grey.
- [Physical Therapy: Needed When Needed](https://health-hats.com/physical-therapy-needed-when-needed/) - Episode features neurologic physical therapist, Darlene Harrier, treating people intermittently for years to promote methods and habits for best function
- [Clinical Decision Support Technology - Still Human](https://health-hats.com/clinical-decision-support-technology-still-human/) - How is the tech sausage of CDS made? A look behind the scenes with Laura Marcial. Right-sizing my expectations.
- [Employed Family Caregivers - The Difference Collaborative](https://health-hats.com/difference_collaborative/) - Listen for surrounding caregiving. Explore as a team. Seek solutions. Engage senior staff. Emphasize flexibility. Connect to resources. Share. Promote self-care. Advocate.
- [Retirement  -  Micro-stepping with Mini-goals](https://health-hats.com/retirement-micro-stepping-with-mini-goals/) - Cynthia Meyer created the Second Wind Movement for retirees to live their best life.
- [Engaging with Sax – Good as I Am - Merry Holidays](https://health-hats.com/engaging-with-sax-good-as-i-am-merry-holidays/) - A musical health montage celebrating the holidays. Engaging with sax. Using different parts of my brain, learning each day, keeps me humble & spiritually strong
- [Impact Learning: Own our decisions. Do the work every day.](https://health-hats.com/impact-learning-own-our-decisions-do-the-work-every-day/) - 2 things apply to health & learning independent of genetics, preferences, experiences, capabilities. Own our decisions and be willing to do the work every day.
- [Gratitude, Podcasting, Best Health](https://health-hats.com/gratitude-podcasting-best-health/) - First anniversary of podcasting-52 episodes, 3,000 downloads, I'm grateful for your support and all you do. Happy Thanksgiving! Best health, you and yours!
- [Teachable Spirit. Patient Family Advisors.](https://health-hats.com/teachable-spirit-patient-family-advisors/) - Health equity depends on patient family advisors. Libby Hoy leads PFCC Partners to improve the quality, safety, & experience of healthcare w authentic partnerships
- [Partner with People at the Center End-to-End](https://health-hats.com/partner-with-people-at-the-center-end-to-end/) - CDS is an experiment, only getting better with use. We should try it, whatever it is, and learn. Learn what helps us make decisions and what doesn’t.
- [Caring for Parents. It’s Their Life. Open the Door.](https://health-hats.com/caring-for-parents-its-their-life-open-the-door/) - Gut-wrenching experience to manage deterioration of parents. How to partner with reluctant parents? What's best for them? Maintain our boundaries as we help
- [Humanity Before Technology - Clinical Decision Support](https://health-hats.com/humanity-before-technology-clinical-decision-support/) - The who, what, where, why of clinical decisions & Clinical Decision Support. Also uncertainty, the 3 T’s (Time, Trust, Talk) and the 2 C’s (Control & Connection)
- [Independent Community Benefit Practice](https://health-hats.com/independent-community-benefit-practice/) - Many of us advocates, activists, & partners work alone, we benefit the community, & it’s a professional practice: Independent Community Benefit Practice.
- [More Patient Experts at the Table](https://health-hats.com/more-patient-experts-at-the-table/) - Patient expert, patient partner. Many labels. Whatever you call us, invite us to sit at decision-making tables. Treat us as equals. Respect us. Do something with it.
- [Lead by Example](https://health-hats.com/lead-by-example/) - 4 strokes between 21 and 39. Misdiagnosed. Advocating for Heart/Stroke/Moyamoya/Rare Diseases. Keep learning, accept help. Naps are good. Teach the children.
- [CEO of Your Health Now](https://health-hats.com/ceo-of-your-health-now/) - Leading and managing a company of me and my health! CEO of your health. Let's take a few and grok this crazy frame. Beats patient engagement & patient-centered.
- [Seize Control, Cede Control as CEO of Your Health](https://health-hats.com/seize-control-cede-control-as-ceo-of-your-health/) - My company performs well. I seize control. I ask for help and cede control. Amy Faeskorn teaches Improv's ‘yes and’ approach to best health.
- [A Learning Community for CEOs of Your Health](https://health-hats.com/a-learning-community-for-ceos-of-your-health/) - Learning to be CEO of your health: it's up to us to the heavy lifting. We can't rely on clinicians for that. CEOs need small communities of support to learn
- [Overtreated, Untreated, and Mistreated](https://health-hats.com/overtreated-untreated-and-mistreated/) - From her 8-sec life changing accident feeling overtreated, undertreated and mistreated to reality TV, hope and help, virtual reality.
- [Make a Ruckus Podcasting](https://health-hats.com/make-a-ruckus-podcasting/) - My 45-year story to podcasting with sparks and nudges, making a ruckus, sharing stories, asking hard questions, and translating for a diverse audience.
- [Crafting Solutions to Conflict](https://health-hats.com/crafting-solutions-to-conflict/) - Most decisions don’t need to be made on other’s schedule. Most not permanent. Try it and change. Best to know and avoid hot button words. Practice in advance.
- [CEO of My Health](https://health-hats.com/ceo-of-my-health/) - As the CEO (Chief Executive Officer, the boss) of my health team with a ton of subcontractors, I want to be better at managing, leading, deciding and learning.
- [Standing on the Shoulders of Giants](https://health-hats.com/standing-on-the-shoulders-of-giants/) - You Matter! When your body speaks, listen. No harm in asking for help. We stand on the shoulders of other advocates. Teresa Wright-Johnson leaves her mark.
- [Pain: The Solution - Many Solutions](https://health-hats.com/pain-the-solution-many-solutions/) - Podcast with Amy Baxter. Hear the nitty-gritty of pain & managing pain. It's life. When unnecessary, it sucks. Focus on life & what works. Let's take control.
- [Salt in My Soul. An Unfinished Life](https://health-hats.com/salt-in-my-soul-an-unfinished-life/) - Reviewing "Salt in My Soul" by Mallory Smith and speaking with mother, Diane. Captain of her own ship. Lived HAPPY. Many lessons to share. Heart-warming affirmation!
- [But You Can! Total Self-Care at 13](https://health-hats.com/but-you-can-total-self-care-at-13/) - 0-60 at 13 years old managing own total IV nutrition. Advocacy about drugs, sex, and rock and roll. Warm, extreme, and slow hand-offs
- [Been There, Done That. Open Heart.](https://health-hats.com/been-there-done-that-open-heart/) - The challenge of gauging readiness of young adults and parents to hear the lessons she’s learned. Struggles with PTSD and finding compassion for herself.
- [Breakthrough to College on the Autism Spectrum](https://health-hats.com/breakthrough-to-college-on-the-autism-spectrum/) - Opening the door to college for young adults on the autism spectrum with parents included. Success! I can do it!
- [Setting Personal Health Goals](https://health-hats.com/setting-personal-health-goals-006/) - Best Health destination: Personal health goals. You’re well? Stay well. Acutely ill? Get over it. Chronically ill or dying? Live the best life possible.
- [Time. I Need Some More](https://health-hats.com/time-i-need-some-more/) - A physician's thoughts about the transition of young adults. Time, stages of transition, working with other docs, her family focus. #11 in the series of podcasts
- [I'm not drug-seeking. I'm in pain.](https://health-hats.com/im-not-drug-seeking-im-in-pain/) - Working and managing life as a mom with Sickle Cell Disease. Advocating for yourself. Appreciating and turning into her mom.
- [Living a Happy, Full Life](https://health-hats.com/living-a-happy-full-life/) - People have regular lives, struggles and hopes and dreams also have sickle cell disease and are just trying to live a happy life, a happy full life. That's all.
- [Good listeners. Good conclusions.](https://health-hats.com/good-listeners-good-conclusions/) - She raising young women with Sickle Cell Disease to be commanders of their own ship. The whole family feels the pain of their pain. A fight for health equity.
- [Sound and noise. Senses and voice.](https://health-hats.com/sound-and-noise-senses-and-voice/) - Traveling to Spain with disabilities. A guest in other people's lives. Differentiating between sound and noise. Heightening your senses, expanding your voice.
- [Raising Me To Be a Good Person](https://health-hats.com/raising-me-to-be-a-good-person/) - I never asked about what the whole process had been like caring for me and trying to raise me to be a good person and taking care of all of my medical issues.
- [What is Today, Isn’t Necessarily Tomorrow](https://health-hats.com/what-is-today-isnt-necessarily-tomorrow/) - For parents of young adult: Join a support group, trust your young adult, support positiveness, self-care; implications of adult decisions on your child.
- [Finding a Style that Works](https://health-hats.com/finding-a-style-that-works/) - I can make change happen. One small thing. Start with my doctor. It keeps spiraling down. It doesn't take some big system-wide changed to change anything.
- [Building Capacity. Building Power. Citizen Power.](https://health-hats.com/building-capacity-building-power-citizen-power/) - Capacity for best health ebbs and flows. Calling it, "patient engagement." is too weak. Sustaining citizen capacity is citizen power. Our health depends on it.
- [Looking Out for Each Other](https://health-hats.com/looking-out-for-each-other/) - Mother and daughter explore transitioning to plans about Sara with Sara. Sara had to know her body well and communicate what she knows and doesn't know.
- [16, Sophomore, All-In](https://health-hats.com/16-sophomore-all-in/) - Sara has lived her entire life with chronic medical issues. She's learning to drive her own healthcare and manage the transition to adult medical care.
- [Three Young Adults. 22 Years.](https://health-hats.com/three-young-adults-22-years/) - Jill Woodworth, mother three with Tuberous Sclerosis, managing the transition from pediatric to adult medical care. Fascinating, heartbreaking, and inspiring
- [Men Caregivers Part 1 Podcast](https://health-hats.com/men-caregivers-part-1-podcast-003/) - Four of 6.4 million men caregivers muse on their varied experience, emotions, challenges, joys. We did it because we wanted to and we could. Great stories!
- [Pillow, pills, poop, piss, and pain](https://health-hats.com/pillow-pills-poop-piss-and-pain/) - We did it because we could 20 years a caregiver. I adapted. Key word isn't 'men', it's 'caregiving' Personal care? It depends? Mother, wife? Managing the Dis Ease of Disease
- [Equity: more to achieve the same](https://health-hats.com/equity-more-to-achieve-the-same/) - Equity = People have the same opportunity to achieve best health no matter their social circumstances, biology, genetics, or physical environment.
- [Lessons from the Clowns When Going to the Doctor's](https://health-hats.com/lessons-from-the-clowns-when-going-to-the-doctors/) - Meet Jason Stewart, lead clown at Boston Childen's. Listen to a session at the National Caregiving Conference. Learn about humanity, failure, reading the room.
- [Unite to share data for best health](https://health-hats.com/unite-to-share-data-for-best-health-008/) - Data sharing improves health. But it's difficult and unusual. Not sharing leads to error, wasted time, Can we could work together to make data sharing routine?

## Pages

- [Danny van Leeuwen Health Hats](https://health-hats.com/) - Best physical, mental, and spiritual health = living at peak performance no matter our biology, abilities, environment, circumstances. Follow my podcast for more
- [Support](https://health-hats.com/support/) - “Everything I make is free. On purpose.” I’m a person with MS, a caregiver activist, a best-health journalist, a musician, and a wheelchair and crutches user. I’ve been publishing for years: conversations, musings, and videos about navigating health and care as a human being — not a diagnosis, not a billing code. My audience is
- [Support Health Hats](https://health-hats.com/contribute/) - Everything I make is free. On purpose. I’m a patient/caregiver activist, musician, wheelchair and crutches user. I’ve been creating Health Hats for years: conversations, musings, and short and long videos about attaining optimal health. My audience is advocates, caregivers, clinicians, and nerds navigating a complex system. The people who most need this content are often
- [CDS : Choices About Your Health With Your Team v2](https://health-hats.com/cds-choices-about-your-health-with-your-team-v2/) - CDS: Choices About Your Health With Your Team Computable information for people to make health choices when needed, that they can use, in a context reflecting their life experience. Humanity Before Technology-Clinical Decision Support Walking through the who, what, where, and why of clinical decisions and Clinical Decision Support? Why we should care and what
- [Explore](https://health-hats.com/explore/) - Explore the Health Hats archives, with hundreds of posts spanning 11+ years Explore by Content Type Written Only Podcast: Audio + Written Video + Audio + Written Explore by Topic Covid-19 People Living Safely Chronic pain management Making health choices From pediatric to adult medical care Caregiving Search the Archives Search: Search Explore by Keyword
- [Interviews of Danny](https://health-hats.com/interviews_of_dvlhh/) - Interviews by others of Danny van Leeuwen/Health Hats in podcasts, recordings, videos, and radio since 2017.
- [OpaRules](https://health-hats.com/patient_engagement/) - CEO of my health. Citizen participation as advisors at the tables of governance, design, operations, & learning in healthcare delivery, policy, and research
- [Covid-19](https://health-hats.com/covid-19-people-living-safely/) - Person-first advocates finding up-to-date, trustworthy answers to questions regular people have about living safely in a pandemic in a manner they can use.
- [Adaptive Travel](https://health-hats.com/adaptive-travel/) - Travel with abilities. Accept what is, assemble a team and equipment, prepare and train, take calculated risks, let the endorphins flow, and tell the story.
- [Referral](https://health-hats.com/referral/) - Refer a Friend Warm, live referrals to Health Hats, the Podcast, to a crony or two, work best to help me grow my community. Email a friend about Health Hats: Please enable JavaScript in your browser to complete this form. Please enable JavaScript in your browser to complete this form. Your Name * First Last
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- [Caregiving](https://health-hats.com/ncc_2018/) - National Caregiving Conference Nov 18. Men Caregivers. Reading the Room and Yourself: Lessons from the Clowns
- [Chronic Pain Management](https://health-hats.com/chronic-pain-management-science-art-experiment/) - Person, Team, Toolbox, Plan. Everything works for someone. Nothing works for everyone. Nothing works every time. Bittersweet stories, resources.
- [Transitioning from Pediatric to Adult Medical Care](https://health-hats.com/ya_transition/) - Young Adults with Complex Conditions Transitioning from Pediatric to Adult Medical Care - a Health Hats, the Podcast series
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- [Person-First Safe Living](https://health-hats.com/patient-first-safe-living/) - How can laypeople find up-to-date, trustworthy answers to questions they have about living safely in an emergency, when they have them, in a useful manner?
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- [Family Caregivers: Hospital to Home](https://health-hats.com/caregivers_hosp_to_home/) - The Family Caregiver Connection: Supporting Essential Care Partners as Patients Transition to Home
- [Podcast](https://health-hats.com/pod/) - Jun 14 Love0 Alone in a Dark Hospital Room, She Asked Claude By Danny van Leeuwen Advocate, ePatient, Podcasts, Video Spread the love Podcast: Play in new window | Download (Duration: 33:06 — 26.5MB) | Embed Subscribe: Apple Podcasts | Spotify | Email | RSS | More Using AI to track symptoms, weigh medication options,
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- [Managing Pain: One Person's Point of View](https://health-hats.com/managingpain1pov/) - Pain Management / Reducing Opioid Use: Presentations & resources. Includes presentations, blog posts, podcasts, and more.,
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- [Making Choices about your Health with your Team](https://health-hats.com/iwmf-2/) - Making Choices about your Health with your Team. Humanity and Technology. Clinical Decision Support. Trust, Talk, Time, Connection, and Control.
- [Boosting Patient Engagement in a Value-Based World](https://health-hats.com/mgma/) - MGMA Operations Apr 2018. Communication techniques to engage patients, Providers who need assistance, develop different tactics to improve provider skills
- [Supporting Family Caregivers: Hospital to Home](https://health-hats.com/beryl-2018/) - Beryl Patient Experience Conference April 2018. The Family Caregiver Connection: Supporting Essential Care Partners as Patients Transition to Home
- [Plan Care](https://health-hats.com/plan-care/) - Plan Care Understand patients’ health goals and align with your medical goals. Understand patient preferences and culture. Document who on the patient’s team does what, when? Alzheimer's Reading Room (website) Description: The Alzheimer’s Reading Room is the number one source of high quality expert information for the entire Alzheimer’s and dementia communities. The goal of the
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- [Privacy Policy www.health-hats.com](https://health-hats.com/privacy-policy-www-health-hats-com/) - This privacy policy has been compiled to better serve those who are concerned with how their 'Personally Identifiable Information' (PII) is being used online. PII, as described in US privacy law and information security, is information that can be used on its own or with other information to identify, contact, or locate a single person,
- [Coaching and Advising](https://health-hats.com/how-can-i-help-you/coaching-and-advising/) - Is this you? I’m a really good leader. I have a strong mission, vision, and team. I want to stay on the top of my game. I need a coach to help me review my strategy, fine tune my plan, and ensure that my personal, home, and work life has balance. I’m new to leadership.
- [Speaking](https://health-hats.com/how-can-i-help-you/speaking/) - Speaking A dynamic speaker, full of stories highlighting points to be made, I have spoken at HIMSS, the Medical Informatics World Conference, and the National Caregivers Conference about Family Caregivers, the ANCC Magnet Conference and ONL’s Leadership Academy about Transformational Leadership and Cultural Change, and for The Society of Participatory Medicine and PCORI about Informed Decision-Making. I have a YouTube Channel of brief broadcasts. I’ve

## Slides

- [Auto Draft](https://health-hats.com/home_slider/auto-draft/)

## Portfolio

- [Crafting Solutions to Conflict](https://health-hats.com/portfolio/crafting-solutions-to-conflict/)
- [Putting Patients and Clinicians at the Center of CDS Development and Implementation](https://health-hats.com/portfolio/putting-patients-and-clinicians-at-the-center-of-cds-development-and-implementation/)
- [](https://health-hats.com/portfolio/3792/)
- [MS-SUPPORT Decision Aid Promotes Collaborative Decision-Making and Treatment Adherence for Multiple Sclerosis](https://health-hats.com/portfolio/ms-support-decision-aid-promotes-collaborative-decision-making-and-treatment-adherence-for-multiple-sclerosis/)
- [Pride Falls](https://health-hats.com/portfolio/3743/)
- [Boosting Patient Engagement in a Value-Based World](https://health-hats.com/portfolio/boosting-patient-engagement-in-a-value-based-world/)
- [Give Me My DaM Data::The Revolution](https://health-hats.com/portfolio/give-me-my-dam-datathe-revolution/)
- [CMS Technical Expert Panel Summary January 2018](https://health-hats.com/portfolio/cms-technical-expert-panel-summary-january-2018/)
- [Supporting Family Caregivers](https://health-hats.com/portfolio/supporting-family-caregivers/)
- [Communication at Transitions: One Audacious Bite at a Time](https://health-hats.com/portfolio/communication-transitions-one-audacious-bite-time/) - Our health journey is teams of people at the center of care taking such actions to provide healthcare and service to us. During this journey, we transition from one setting to another, from one team to another, repeatedly. One of the most persistent and ubiquitous frustrations in health care is that of poor communication. Poor communication
- [WEGO Health Solutions: Value Patient Caregiver Experts](https://health-hats.com/portfolio/wego-health-solutions-value-patient-caregiver-experts/)
- [Interview on #PatientOrator with Kistein Monkhouse](https://health-hats.com/portfolio/interview-patientorator-kistein-monkhouse/)
- [The Family Caregiver Connection: Supporting Essential Care Partners as Patients to Home](https://health-hats.com/portfolio/family-caregiver-connection-supporting-essential-care-partners-patients-home/)
- [What Your Patient Thinks - Learning Together](https://health-hats.com/portfolio/what-your-patient-thinks-learning-together/) - WHat is Your Patient Thinking
- [Lived Experience + Expertise = Value](https://health-hats.com/portfolio/lived-experience-expertise-value/)
- [Improving Behavioral Health Satisfaction Assessment: Measuring Patients’ Perceptions](https://health-hats.com/portfolio/improving-behavioral-health-satisfaction-assessment-measuring-patients-perceptions-mayjune-2006/)
- [Book Review: e-Patients Live Longer](https://health-hats.com/portfolio/book-review-e-patients-live-longer/)
- [Book Review: Far from the Tree](https://health-hats.com/portfolio/book-review-far-tree/)
- [Bring a Companion to Your Next Doctor's Appointment](https://health-hats.com/portfolio/bring-companion-next-doctors-appointment/)
- [“Sister” Organization! ACH: Academy of Communication in Healthcare](https://health-hats.com/portfolio/sister-organization-aach-american-academy-communication-healthcare/)
- [Engaged with Sax](https://health-hats.com/portfolio/engaged-with-sax/)
- [OpenID HEART: Sharing our data gives patients power](https://health-hats.com/portfolio/openid-heart-sharing-data-gives-patients-power/)
- [Communicate What? #CarePlanning](https://health-hats.com/portfolio/communicate-what-careplanning/)
- [Precision Prism](https://health-hats.com/portfolio/precision-prism/)
- [Health Partner or Care Partner?](https://health-hats.com/portfolio/health-partner-care-partner/)
- [Informed Decision Making SPM Conference 2017](https://health-hats.com/portfolio/informed-decision-making-spm-conference-2017/)
- [The Personal Health Journey](https://health-hats.com/portfolio/the-personal-health-journey/) - https://februarystars.co.uk/2017/11/personal-health-journey/
- [Family Caregivers on the Front Lines through HIT](https://health-hats.com/portfolio/family-caregivers-front-lines-hit/)
- [Marrying Workflow and Life Flow: A Patient and Clinician Story](https://health-hats.com/portfolio/marrying-workflow-life-flow-patient-clinician-story/)
- [Business Role of Healthcare Quality Professionals](https://health-hats.com/portfolio/business-role-healthcare-quality-professionals/)
- [On Performance Improvement and Organizational Recovery](https://health-hats.com/portfolio/performance-improvement-organizational-recovery-jhq-novdec-2003/)
- [Medication Error Rates](https://health-hats.com/portfolio/medication-error-rates/) - Taking too long? Reload document | Open in new tab Download [701.51 KB] Published in Joint Commission Journal on Quality April 1994
- [Learning Together: What Your Patients Think](https://health-hats.com/portfolio/learning-together-patients-think-bmj-july-19-2017/)
- [I Wasn't Born with a Tattoo Telling Me How Long I Had to Live](https://health-hats.com/portfolio/wasnt-born-tattoo-telling-long-live/)
- [93,000,000 Caregivers as Partners](https://health-hats.com/portfolio/93000000-caregiver-partner/)
- [Calling All Advocates - Health Hats Interview](https://health-hats.com/portfolio/calling-advocates-health-hats-interview/)
- [Setting Personal Health Goals](https://health-hats.com/portfolio/setting-personal-health-goals/)
- [Building a Team and Getting What You Need: Interview](https://health-hats.com/portfolio/interviewed-radioactive-broadcasting-urgent-care/)
- [Accessing Our Health Data](https://health-hats.com/portfolio/accessing-health-records/)
- [Do No Harm](https://health-hats.com/portfolio/no-harm-jhq-janfeb-2001/)
- [Transformational Leadership](https://health-hats.com/portfolio/maintaining-standards-care-reduced-resources-transformational-leadership/)
- [Clinicians are from Mars, ePatients are from Venus](https://health-hats.com/portfolio/clinicians-mars-epatients-venus/)
- [You Do Great Work, We Can Help](https://health-hats.com/portfolio/great-work-can-help/)
- [Person-Centered #CarePlanning-What data?](https://health-hats.com/portfolio/person-centered-careplanning-data/)
- [The Guidebook for Peer Respite Self-Evaluation](https://health-hats.com/portfolio/guidebook-peer-respite-self-evaluation/)
- [Service Agreements Among Friends and Colleagues](https://health-hats.com/portfolio/service-agreements-among-friends-colleagues/)

## resources

- [MHQP Resources for Empowering Patients](https://health-hats.com/resource/mhqp/)
- [73 Cents - Regina Holliday](https://health-hats.com/resource/regina_mural/)
- [Alcohol Abuse Among the Elderly](https://health-hats.com/resource/etoh_elderly/)
- [Young Adults Series Intro Blog Post](https://health-hats.com/resource/ya20191230-2/)
- [Intro Young Adults Blog Post](https://health-hats.com/resource/ya20191230/)
- [Co-Architecting Healthcare Transformation](https://health-hats.com/resource/co-architect-hc-trans/)
- [Chronic Pain Self-Management Program](https://health-hats.com/resource/chronic-pain-self-mgt/)
- [Attacking the Opioid Crisis on a Budget](https://health-hats.com/resource/opioid-crisis-on-budget/)
- [Curable Health Pain Management app](https://health-hats.com/resource/curable/)
- [Sons in the Workplace: The Role of Male Caregivers](https://health-hats.com/resource/sons-in-the-workplace/)
- [Increasing uptake of comparative effectiveness and patient-centered outcomes research](https://health-hats.com/resource/increase_uptake_cer_pcor/)
- [What do empowered and engaged really mean?](https://health-hats.com/resource/empowered-and-engaged/)
- [What’s the Problem with the Experience of People at the Center of Care?](https://health-hats.com/resource/problem_with_people_at_center/)
- [Carly](https://health-hats.com/resource/carly/)
- [Changeful](https://health-hats.com/resource/changeful/)
- [Tunza](https://health-hats.com/resource/tunza/)
- [Carium](https://health-hats.com/resource/carium/)
- [The Difference Collaborative](https://health-hats.com/resource/difference_collaborative/)
- [Designing & Measuring Engagement in Behavior Change CHXD Webinar](https://health-hats.com/resource/designing-measuring-engagement-in-behavior-change-chxd-webinar/)
- [Circle of Care](https://health-hats.com/resource/circle_care/)
- [Health Populi](https://health-hats.com/resource/healthpopuli/)
- [Society for Participatory Medicine](https://health-hats.com/resource/s4pm/)
- [Patient-Centered Clinical Decision Support Learning Network](https://health-hats.com/resource/pccds-ln/)
- [IHI Tools to Support Patient Engagement](https://health-hats.com/resource/ihi_pt_engagement_tools/)
- [EU Patient Empowerment Campaign](https://health-hats.com/resource/eu_pec/)
- [CDS Connect](https://health-hats.com/resource/cds_connect/)
- [Buzzy Drug-Free Pain Relief - MMJ Labs](https://health-hats.com/resource/mmj_labs_buzzy/)
- [Stanford researchers: The secret to overcoming the opioid crisis may lie partly in the mind](https://health-hats.com/resource/washpost_mind_body/)
- [Engulfed in Opioid Deaths, Ohio Turns to Science](https://health-hats.com/resource/sa_ohio_science_opioid_deaths/)
- [What Works For Pain?](https://health-hats.com/resource/what_works_for_pain/)
- [The Pain Companion](https://health-hats.com/resource/pain_companion/)
- [CR Alternative health treatments that work](https://health-hats.com/resource/alt_tx_that_work_cr/)
- [Avoid the Hospital Opioid Trap](https://health-hats.com/resource/hosp_opioid_trap/)
- [WellBrain](https://health-hats.com/resource/wellbrain/)
- [The British Pain Society](https://health-hats.com/resource/the-british-pain-society/)
- [Patient Activation Measure (PAM)](https://health-hats.com/resource/pam/)
- [Participatory Medicine as Revolution!](https://health-hats.com/resource/participatory-medicine-as-revolution/)
- [Chronic Mom](https://health-hats.com/resource/chronic_mom/)
- [Words Matter When Talking About Pain With Your Doctor](https://health-hats.com/resource/pain_scale_npr/)
- [Ownership vs Control of Your Health Data](https://health-hats.com/resource/ownership-vs-control-of-your-health-data/)
- [CHRONIC PAIN: A CYCLE OF STRESS AND PAIN](https://health-hats.com/resource/curable_cycle_stress_pain/)
- [Recommendations for Building and Maintaining Trust in Clinical Decision Support Knowledge Artifacts](https://health-hats.com/resource/cds_trust/)
- [Care Transitions](https://health-hats.com/resource/transitions/)
- [The Pain Companion](https://health-hats.com/resource/the-pain-companion/)
- [Proponents of Play](https://health-hats.com/resource/prop_play/)
- [Noninvasive Nonpharmacological Treatment for Chronic Pain: A Systematic Review](https://health-hats.com/resource/ahrq_systemic_nonpharm_pain/)
- [Men Are Family Caregivers, Too](https://health-hats.com/resource/men_caregivers_too/)
- [Healthy Humor](https://health-hats.com/resource/healthy_humor/)
- [Gabe's Care Map](https://health-hats.com/resource/gabe_care-map/)
- [Engaging Family Caregivers as Partners in Care Transitions](https://health-hats.com/resource/engaging_family_partners_transitions/)
- [Caregiving.com](https://health-hats.com/resource/caregiving-com/)
- [Caregiver Statistics: Demographics](https://health-hats.com/resource/caregiver_stats/)
- [Atlas CareMaps](https://health-hats.com/resource/atlas_caremaps/)
- [American Chronic Pain Association](https://health-hats.com/resource/acpa/)
- [Alzheimer's Reading Room](https://health-hats.com/resource/alzeihmers-reading-room/)
- [AARP videos: Male Caregivers](https://health-hats.com/resource/aarp_male_caregivers/)
- [Noninvasive Nonpharmacological Treatment for Chronic Pain: A Systematic Review](https://health-hats.com/resource/nonphrma_pain_tx_ahrq/)
- [Methods and impact of engagement in research](https://health-hats.com/resource/methods-and-impact-of-engagement-in-research/)
- [Patient Centered Outcomes Research Institute (PCORI)](https://health-hats.com/resource/pcori/)

## Tags

- [improv](https://health-hats.com/tag/improv/)
- [music](https://health-hats.com/tag/music/)
- [leadership](https://health-hats.com/tag/leadership/)
- [superpower](https://health-hats.com/tag/superpower/)
- [mindfulness](https://health-hats.com/tag/mindfulness/)
- [multiple sclerosis](https://health-hats.com/tag/multiple-sclerosis/)
- [MS](https://health-hats.com/tag/ms/)
- [habits](https://health-hats.com/tag/habits/)
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- [health partners](https://health-hats.com/tag/health-partners/)
- [engagement](https://health-hats.com/tag/engagement/)
- [Medical Record](https://health-hats.com/tag/medical-record/)
- [Behavioral Health](https://health-hats.com/tag/behavioral-health/)
- [adherence](https://health-hats.com/tag/adherence/)
- [research](https://health-hats.com/tag/research/)
- [PCORI](https://health-hats.com/tag/pcori/)
- [ePatient](https://health-hats.com/tag/epatient/)
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- [interoperability](https://health-hats.com/tag/interoperability/)
- [standards](https://health-hats.com/tag/standards/)
- [Blue Button](https://health-hats.com/tag/blue-button/)
- [culture](https://health-hats.com/tag/culture/)
- [health literacy](https://health-hats.com/tag/health-literacy/)
- [catalyst](https://health-hats.com/tag/catalyst/)
- [consent](https://health-hats.com/tag/consent/)
- [portal](https://health-hats.com/tag/portal/)
- [community](https://health-hats.com/tag/community/)
- [technology](https://health-hats.com/tag/technology/)
- [grief](https://health-hats.com/tag/grief/)
- [social media](https://health-hats.com/tag/social-media/)
- [end-of-life](https://health-hats.com/tag/end-of-life/)
- [policy](https://health-hats.com/tag/policy/)
- [Pain](https://health-hats.com/tag/pain/)
- [fear](https://health-hats.com/tag/fear/)
- [safety](https://health-hats.com/tag/safety/)
- [Data](https://health-hats.com/tag/data/)
- [Outcomes](https://health-hats.com/tag/outcomes/)
- [Mentoring](https://health-hats.com/tag/mentoring/)
- [transitions](https://health-hats.com/tag/transitions/)
- [The Quadruple Aim](https://health-hats.com/tag/the-quadruple-aim/)
- [Community Health](https://health-hats.com/tag/community-health/)
- [care planning](https://health-hats.com/tag/care-planning/)
- [palliative care](https://health-hats.com/tag/palliative-care/)
- [access](https://health-hats.com/tag/access/)
- [Pharma](https://health-hats.com/tag/pharma/)
- [disability](https://health-hats.com/tag/disability/)
- [lived experience](https://health-hats.com/tag/lived-experience/)
- [Communication](https://health-hats.com/tag/communication/)
- [Quality Measures](https://health-hats.com/tag/quality-measures/)
- [People at the Center of Care](https://health-hats.com/tag/people-at-the-center-of-care/)
- [caregiving](https://health-hats.com/tag/caregiving/)
- [Nursing](https://health-hats.com/tag/nursing/)
- [Fibromyalgia](https://health-hats.com/tag/fibromyalgia/)
- [Care Partner](https://health-hats.com/tag/care-partner/)
- [choices](https://health-hats.com/tag/choices/)
- [Pay for value](https://health-hats.com/tag/pay-for-value/)
- [EHR](https://health-hats.com/tag/ehr/)
- [trust](https://health-hats.com/tag/trust/)
- [self-care](https://health-hats.com/tag/self-care/)
- [marketing](https://health-hats.com/tag/marketing/)
- [pain management](https://health-hats.com/tag/pain-management/)
- [medication reconciliation](https://health-hats.com/tag/medication-reconciliation/)
- [pharmacy](https://health-hats.com/tag/pharmacy/)
- [Activism](https://health-hats.com/tag/activism/)
- [clowns](https://health-hats.com/tag/clowns/)
- [Failure](https://health-hats.com/tag/failure/)
- [empathy](https://health-hats.com/tag/empathy/)
- [measurement](https://health-hats.com/tag/measurement/)
- [CMS](https://health-hats.com/tag/cms/)
- [wheelchair](https://health-hats.com/tag/wheelchair/)
- [mobility](https://health-hats.com/tag/mobility/)
- [revolution](https://health-hats.com/tag/revolution/)
- [coaching](https://health-hats.com/tag/coaching/)
- [open source](https://health-hats.com/tag/open-source/)
- [apps](https://health-hats.com/tag/apps/)
- [decision-making](https://health-hats.com/tag/decision-making/)
- [patient-centered](https://health-hats.com/tag/patient-centered/)
- [Participatory Research](https://health-hats.com/tag/participatory-research/)
- [chronic illness](https://health-hats.com/tag/chronic-illness/)
- [advocacy](https://health-hats.com/tag/advocacy/)
- [cost of care](https://health-hats.com/tag/cost-of-care/)
- [value](https://health-hats.com/tag/value/)
- [clinical decision support](https://health-hats.com/tag/clinical-decision-support/)
- [opioids](https://health-hats.com/tag/opioids/)
- [patient engagement](https://health-hats.com/tag/patient-engagement/)
- [governance](https://health-hats.com/tag/governance/)
- [pathological optimism](https://health-hats.com/tag/pathological-optimism/)
- [telehealth](https://health-hats.com/tag/telehealth/)
- [Cannabis](https://health-hats.com/tag/cannabis/)
- [time management](https://health-hats.com/tag/time-management/)
- [AHRQ](https://health-hats.com/tag/ahrq/)
- [podcast](https://health-hats.com/tag/podcast/)
- [housing](https://health-hats.com/tag/housing/)
- [spiritual](https://health-hats.com/tag/spiritual/)
- [Holocaust](https://health-hats.com/tag/holocaust/)
- [continuity of care](https://health-hats.com/tag/continuity-of-care/)
- [young adults](https://health-hats.com/tag/young-adults/)
- [Young Adult](https://health-hats.com/tag/young-adult/)
- [teen advisory committee](https://health-hats.com/tag/teen-advisory-committee/)
- [Autism](https://health-hats.com/tag/autism/)
- [listening](https://health-hats.com/tag/listening/)
- [podcasting](https://health-hats.com/tag/podcasting/)
- [Parkinson's](https://health-hats.com/tag/parkinsons/)
- [primary care](https://health-hats.com/tag/primary-care/)
- [dementia](https://health-hats.com/tag/dementia/)
- [diversity](https://health-hats.com/tag/diversity/)
- [State of Inclusion](https://health-hats.com/tag/state-of-inclusion/)
- [Health equity](https://health-hats.com/tag/health-equity/)
- [humor](https://health-hats.com/tag/humor/)
- [care coordination](https://health-hats.com/tag/care-coordination/)
- [inclusion](https://health-hats.com/tag/inclusion/)
- [blog](https://health-hats.com/tag/blog/)
- [rare disease](https://health-hats.com/tag/rare-disease/)
- [Citizen participation](https://health-hats.com/tag/citizen-participation/)
- [boundaries](https://health-hats.com/tag/boundaries/)
- [autonomy](https://health-hats.com/tag/autonomy/)
- [hope](https://health-hats.com/tag/hope/)
- [insurance](https://health-hats.com/tag/insurance/)
- [opioid crisis](https://health-hats.com/tag/opioid-crisis/)
- [healthcare](https://health-hats.com/tag/healthcare/)
- [capacity](https://health-hats.com/tag/capacity/)
- [college](https://health-hats.com/tag/college/)
- [pediatrics](https://health-hats.com/tag/pediatrics/)
- [clinical trials](https://health-hats.com/tag/clinical-trials/)
- [parenting](https://health-hats.com/tag/parenting/)
- [Impact Learning](https://health-hats.com/tag/impact-learning/)
- [Peak Capacity](https://health-hats.com/tag/peak-capacity/)
- [Camino de Santiago](https://health-hats.com/tag/camino-de-santiago/)
- [pilgrimage](https://health-hats.com/tag/pilgrimage/)
- [travelogue](https://health-hats.com/tag/travelogue/)
- [inspiration](https://health-hats.com/tag/inspiration/)
- [Walking Gallery](https://health-hats.com/tag/walking-gallery/)
- [CInderblocks](https://health-hats.com/tag/cinderblocks/)
- [Sickle Cell](https://health-hats.com/tag/sickle-cell/)
- [families](https://health-hats.com/tag/families/)
- [congenital heart disease](https://health-hats.com/tag/congenital-heart-disease/)
- [Lupus](https://health-hats.com/tag/lupus/)
- [Breast Cancer](https://health-hats.com/tag/breast-cancer/)
- [nutrition](https://health-hats.com/tag/nutrition/)
- [pediatric](https://health-hats.com/tag/pediatric/)
- [agency](https://health-hats.com/tag/agency/)
- [sleep](https://health-hats.com/tag/sleep/)
- [dignity](https://health-hats.com/tag/dignity/)
- [CEO of Your Health](https://health-hats.com/tag/ceo-of-your-health/)
- [physical therapy](https://health-hats.com/tag/physical-therapy/)
- [Chiropractic](https://health-hats.com/tag/chiropractic/)
- [Massage](https://health-hats.com/tag/massage/)
- [PTSD](https://health-hats.com/tag/ptsd/)
- [control](https://health-hats.com/tag/control/)
- [empowerment](https://health-hats.com/tag/empowerment/)
- [patient portal](https://health-hats.com/tag/patient-portal/)
- [high school](https://health-hats.com/tag/high-school/)
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- [peer support](https://health-hats.com/tag/peer-support/)
- [Healthe Voices](https://health-hats.com/tag/healthe-voices/)
- [patient partner](https://health-hats.com/tag/patient-partner/)
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- [connection](https://health-hats.com/tag/connection/)
- [uncertainty](https://health-hats.com/tag/uncertainty/)
- [Alzheimer's](https://health-hats.com/tag/alzheimers/)
- [death](https://health-hats.com/tag/death/)
- [PFCC Partners](https://health-hats.com/tag/pfcc-partners/)
- [Patient Family Advisor](https://health-hats.com/tag/patient-family-advisor/)
- [gratitude](https://health-hats.com/tag/gratitude/)
- [endorphins](https://health-hats.com/tag/endorphins/)
- [retirement](https://health-hats.com/tag/retirement/)
- [privilege](https://health-hats.com/tag/privilege/)
- [function](https://health-hats.com/tag/function/)
- [vulnerability](https://health-hats.com/tag/vulnerability/)
- [health data](https://health-hats.com/tag/health-data/)
- [Bioethics](https://health-hats.com/tag/bioethics/)
- [medical technology](https://health-hats.com/tag/medical-technology/)
- [artificial intelligence](https://health-hats.com/tag/artificial-intelligence/)
- [social justice](https://health-hats.com/tag/social-justice/)
- [sustainability](https://health-hats.com/tag/sustainability/)
- [public health](https://health-hats.com/tag/public-health/)
- [15-minute advantage](https://health-hats.com/tag/15-minute-advantage/)
- [meditation](https://health-hats.com/tag/meditation/)
- [abilities](https://health-hats.com/tag/abilities/)
- [loneliness](https://health-hats.com/tag/loneliness/)
- [Covid-19](https://health-hats.com/tag/covid-19/)
- [musicians](https://health-hats.com/tag/musicians/)
- [suicide](https://health-hats.com/tag/suicide/)
- [Stigma](https://health-hats.com/tag/stigma/)
- [Mark Twain](https://health-hats.com/tag/mark-twain/)
- [safe living](https://health-hats.com/tag/safe-living/)
- [Metadata](https://health-hats.com/tag/metadata/)
- [stress management](https://health-hats.com/tag/stress-management/)
- [WHO](https://health-hats.com/tag/who/)
- [risk tolerance](https://health-hats.com/tag/risk-tolerance/)
- [unintended consequences](https://health-hats.com/tag/unintended-consequences/)
- [ministry](https://health-hats.com/tag/ministry/)
- [Everyone-Included Research](https://health-hats.com/tag/everyone-included-research/)
- [pandemic](https://health-hats.com/tag/pandemic/)
- [person-first](https://health-hats.com/tag/person-first/)
- [evidence-informed guidance](https://health-hats.com/tag/evidence-informed-guidance/)
- [personas](https://health-hats.com/tag/personas/)
- [CDC](https://health-hats.com/tag/cdc/)
- [gratefulness](https://health-hats.com/tag/gratefulness/)
- [community action](https://health-hats.com/tag/community-action/)
- [coalition building](https://health-hats.com/tag/coalition-building/)
- [collaboration](https://health-hats.com/tag/collaboration/)
- [NCQA](https://health-hats.com/tag/ncqa/)
- [institutional racism](https://health-hats.com/tag/institutional-racism/)
- [Maternal Infant Mortality](https://health-hats.com/tag/maternal-infant-mortality/)
- [medical errors](https://health-hats.com/tag/medical-errors/)
- [partnerships](https://health-hats.com/tag/partnerships/)
- [burnout](https://health-hats.com/tag/burnout/)
- [Lechuga Fresca](https://health-hats.com/tag/lechuga-fresca/)
- [dissemination](https://health-hats.com/tag/dissemination/)
- [patient safety](https://health-hats.com/tag/patient-safety/)
- [Social Determinants of Health](https://health-hats.com/tag/social-determinants-of-health/)
- [Health disparities](https://health-hats.com/tag/health-disparities/)
- [screening](https://health-hats.com/tag/screening/)
- [continual learning](https://health-hats.com/tag/continual-learning/)
- [coproduction](https://health-hats.com/tag/coproduction/)
- [depression](https://health-hats.com/tag/depression/)
- [self-advocacy](https://health-hats.com/tag/self-advocacy/)
- [spiritual health](https://health-hats.com/tag/spiritual-health/)
- [leukemia](https://health-hats.com/tag/leukemia/)
- [Help the Helpers](https://health-hats.com/tag/help-the-helpers/)
- [Maternal Health](https://health-hats.com/tag/maternal-health/)
- [patient hackers](https://health-hats.com/tag/patient-hackers/)
- [Comparative effectiveness research](https://health-hats.com/tag/comparative-effectiveness-research/)
- [Society for Participatory Medicine](https://health-hats.com/tag/society-for-participatory-medicine/)
- [NQF](https://health-hats.com/tag/nqf/)
- [belonging](https://health-hats.com/tag/belonging/)
- [employee health](https://health-hats.com/tag/employee-health/)
- [Learning Health System](https://health-hats.com/tag/learning-health-system/)
- [FHIR](https://health-hats.com/tag/fhir/)
- [CER](https://health-hats.com/tag/cer/)
- [SDoH](https://health-hats.com/tag/sdoh/)
- [Board of Directors](https://health-hats.com/tag/board-of-directors/)
- [Open Notes](https://health-hats.com/tag/open-notes/)
- [community research](https://health-hats.com/tag/community-research/)
- [staff morale](https://health-hats.com/tag/staff-morale/)
- [schizophrenia](https://health-hats.com/tag/schizophrenia/)
- [cancer](https://health-hats.com/tag/cancer/)
- [diabetes](https://health-hats.com/tag/diabetes/)
- [Blindness](https://health-hats.com/tag/blindness/)
- [chemo](https://health-hats.com/tag/chemo/)
- [emerging adults](https://health-hats.com/tag/emerging-adults/)
- [mental illness](https://health-hats.com/tag/mental-illness/)
- [Students with Psychosis](https://health-hats.com/tag/students-with-psychosis/)
- [Peer Specialist](https://health-hats.com/tag/peer-specialist/)
- [handicap travel](https://health-hats.com/tag/handicap-travel/)
- [substance use](https://health-hats.com/tag/substance-use/)
- [harm reduction](https://health-hats.com/tag/harm-reduction/)
- [Medicaid](https://health-hats.com/tag/medicaid/)
- [editing](https://health-hats.com/tag/editing/)
- [writing](https://health-hats.com/tag/writing/)
- [evidence gaps](https://health-hats.com/tag/evidence-gaps/)
- [Stakeholder Advisory Panel](https://health-hats.com/tag/stakeholder-advisory-panel/)
- [dynamic tension](https://health-hats.com/tag/dynamic-tension/)
- [Henrietta Lacks](https://health-hats.com/tag/henrietta-lacks/)
- [compassion](https://health-hats.com/tag/compassion/)
- [trauma](https://health-hats.com/tag/trauma/)
- [worry](https://health-hats.com/tag/worry/)
- [Patient Expert](https://health-hats.com/tag/patient-expert/)
- [patient recorded data](https://health-hats.com/tag/patient-recorded-data/)
- [genetics](https://health-hats.com/tag/genetics/)
- [implementation science](https://health-hats.com/tag/implementation-science/)
- [engagement science](https://health-hats.com/tag/engagement-science/)
- [perception](https://health-hats.com/tag/perception/)
- [saxophone](https://health-hats.com/tag/saxophone/)
- [3Ts & 2Cs](https://health-hats.com/tag/3ts-2cs/)
- [multimedia](https://health-hats.com/tag/multimedia/)
- [home care](https://health-hats.com/tag/home-care/)
- [Seth Godin](https://health-hats.com/tag/seth-godin/)
- [emergency medicine](https://health-hats.com/tag/emergency-medicine/)
- [ACLS](https://health-hats.com/tag/acls/)
- [ICU](https://health-hats.com/tag/icu/)
- [Managed Care](https://health-hats.com/tag/managed-care/)
- [long covid](https://health-hats.com/tag/long-covid/)
- [Casey Quinlan](https://health-hats.com/tag/casey-quinlan/)
- [Effectiveness](https://health-hats.com/tag/effectiveness/)
- [Efficacy](https://health-hats.com/tag/efficacy/)
- [DisabilityAwareness](https://health-hats.com/tag/disabilityawareness/)
- [MobilityMatters](https://health-hats.com/tag/mobilitymatters/)
- [HealthHats](https://health-hats.com/tag/healthhats/)
- [InspirationalJourney](https://health-hats.com/tag/inspirationaljourney/)
- [TravelForAll](https://health-hats.com/tag/travelforall/)
- [AimeeCopelandFoundation](https://health-hats.com/tag/aimeecopelandfoundation/)
- [BreakBarriers](https://health-hats.com/tag/breakbarriers/)
- [ActionTrackChair](https://health-hats.com/tag/actiontrackchair/)
- [OutdoorFreedom](https://health-hats.com/tag/outdoorfreedom/)
- [HealthAccess](https://health-hats.com/tag/healthaccess/)
- [CaregiverSupport](https://health-hats.com/tag/caregiversupport/)
- [HealthData](https://health-hats.com/tag/healthdata/)
- [CareManagement](https://health-hats.com/tag/caremanagement/)
- [AcademyHealth](https://health-hats.com/tag/academyhealth/)
- [Datapalooza](https://health-hats.com/tag/datapalooza/)
- [TrustCommunities](https://health-hats.com/tag/trustcommunities/)
- [DataTransparency](https://health-hats.com/tag/datatransparency/)
- [HealthcareRevolution](https://health-hats.com/tag/healthcarerevolution/)
- [DataSharing](https://health-hats.com/tag/datasharing/)
- [DataToWisdom](https://health-hats.com/tag/datatowisdom/)
- [PersonalizedMedicine](https://health-hats.com/tag/personalizedmedicine/)
- [PCORnet](https://health-hats.com/tag/pcornet/)
- [Adaptive Travel](https://health-hats.com/tag/adaptive-travel/)
- [Ethics](https://health-hats.com/tag/ethics/)
- [Transparency](https://health-hats.com/tag/transparency/)
- [Environmental Impact](https://health-hats.com/tag/environmental-impact/)
- [Healthcare Data](https://health-hats.com/tag/healthcare-data/)
- [AI Tools](https://health-hats.com/tag/ai-tools/)
- [Content Creation](https://health-hats.com/tag/content-creation/)
- [Digital Health](https://health-hats.com/tag/digital-health/)
- [AI](https://health-hats.com/tag/ai/)
- [Digital Transformation](https://health-hats.com/tag/digital-transformation/)
- [Tech Education](https://health-hats.com/tag/tech-education/)
- [GenerativeAI](https://health-hats.com/tag/generativeai/)
- [MachineLearning](https://health-hats.com/tag/machinelearning/)
- [NeuralNetworks](https://health-hats.com/tag/neuralnetworks/)
- [wheelchair travel](https://health-hats.com/tag/wheelchair-travel/)
- [clinician partners](https://health-hats.com/tag/clinician-partners/)
- [health communication](https://health-hats.com/tag/health-communication/)
- [resistance](https://health-hats.com/tag/resistance/)
- [Rebels in Health](https://health-hats.com/tag/rebels-in-health/)
- [HealthCare Advocacy](https://health-hats.com/tag/healthcare-advocacy/)
- [PatientVoice](https://health-hats.com/tag/patientvoice/)
- [SelfCare](https://health-hats.com/tag/selfcare/)
- [CommunitySupport](https://health-hats.com/tag/communitysupport/)
- [Healthcare AI](https://health-hats.com/tag/healthcare-ai/)
- [AI Hallucinations](https://health-hats.com/tag/ai-hallucinations/)
- [Algorithm Review Boards](https://health-hats.com/tag/algorithm-review-boards/)
- [AI Transparency](https://health-hats.com/tag/ai-transparency/)
- [AI Ethics](https://health-hats.com/tag/ai-ethics/)
- [My Health Team](https://health-hats.com/tag/my-health-team/)
- [Jenga](https://health-hats.com/tag/jenga/)
- [RebuildTogether](https://health-hats.com/tag/rebuildtogether/)
- [CriticalSystems](https://health-hats.com/tag/criticalsystems/)
- [Crisis](https://health-hats.com/tag/crisis/)
- [Cuba](https://health-hats.com/tag/cuba/)
- [improvisation](https://health-hats.com/tag/improvisation/)
- [HavanaJazzFestival](https://health-hats.com/tag/havanajazzfestival/)
- [BariSax](https://health-hats.com/tag/barisax/)
- [intentional community](https://health-hats.com/tag/intentional-community/)
- [Community Building](https://health-hats.com/tag/community-building/)
- [Homeschooling](https://health-hats.com/tag/homeschooling/)
- [pandemic parenting](https://health-hats.com/tag/pandemic-parenting/)
- [HealthcareInformatics](https://health-hats.com/tag/healthcareinformatics/)
- [PatientEngagement](https://health-hats.com/tag/patientengagement/)
- [ANIA2025](https://health-hats.com/tag/ania2025/)
- [risk management](https://health-hats.com/tag/risk-management/)
- [prevention](https://health-hats.com/tag/prevention/)
- [conflict resolution](https://health-hats.com/tag/conflict-resolution/)
- [power dynamics](https://health-hats.com/tag/power-dynamics/)
- [Data Governance](https://health-hats.com/tag/data-governance/)
- [hdpalooza](https://health-hats.com/tag/hdpalooza/)
- [Adolescent Health](https://health-hats.com/tag/adolescent-health/)
- [Patient Trust](https://health-hats.com/tag/patient-trust/)
- [Personal Health Data](https://health-hats.com/tag/personal-health-data/)
- [Privacy](https://health-hats.com/tag/privacy/)
- [Permissions](https://health-hats.com/tag/permissions/)
- [program evaluation](https://health-hats.com/tag/program-evaluation/)
- [Data Party](https://health-hats.com/tag/data-party/)
- [Morningside Studios](https://health-hats.com/tag/morningside-studios/)
- [risks](https://health-hats.com/tag/risks/)
- [Belize](https://health-hats.com/tag/belize/)
- [Health Tech](https://health-hats.com/tag/health-tech/)
- [National Nurses Week](https://health-hats.com/tag/national-nurses-week/)
- [Rotunda Hospital](https://health-hats.com/tag/rotunda-hospital/)
- [Handel's Messiah](https://health-hats.com/tag/handels-messiah/)
- [Bartholomew Mosse](https://health-hats.com/tag/bartholomew-mosse/)
- [healthcare access](https://health-hats.com/tag/healthcare-access/)
- [Chronic Fatigue Syndrome](https://health-hats.com/tag/chronic-fatigue-syndrome/)
- [Post-Exertion Malaise](https://health-hats.com/tag/post-exertion-malaise/)
- [New Zealand](https://health-hats.com/tag/new-zealand/)

## Project Categories

- [My Portfolio](https://health-hats.com/project-type/my-portfolio/) - Written YouTube – Audiovisual Projects
- [Written](https://health-hats.com/project-type/written/) - articles, guest blog posts, PowerPoint
- [YouTube](https://health-hats.com/project-type/youtube/) - Interviews, presentations, music
- [Projects](https://health-hats.com/project-type/projects/) - Projects I work on
- [Help Each Other](https://health-hats.com/project-type/help_each_other/) - Understand and Support Each Other Plan care, build health team, caregiving/parenting, self-care
- [Plan Care](https://health-hats.com/project-type/plan_care/) - set health and medical goals, preferences, culture, who does what, when, service agreements
- [Build Health Team](https://health-hats.com/project-type/build_health_team/) - lead, roles, care partner, engagement, expertise, mentor, coach, teamwork
- [Caregiving/Parenting](https://health-hats.com/project-type/caregiving_parenting/)
- [Self-care](https://health-hats.com/project-type/self-care/) - living the best life possible, preventing burnout, supporting each other
- [Learn What Works](https://health-hats.com/project-type/learn_what_works/) - research, outcomes, stories, performance improvement, leadership
- [Research](https://health-hats.com/project-type/research/) - what works for populations, comparative effectiveness
- [Outcomes](https://health-hats.com/project-type/outcomes/) - perception, surveys, did the plan meet your health or medical goals?
- [Stories](https://health-hats.com/project-type/stories/) - N=1 for me
- [Performance Improvement](https://health-hats.com/project-type/performance_improvement/)
- [Leadership](https://health-hats.com/project-type/leadership/) - team, department, organization, advocacy
- [Communicate](https://health-hats.com/project-type/communicate/) - data management, hand-offs, continuity of care
- [Data Management](https://health-hats.com/project-type/data_management/) - EMR, PHR, Tracking, Privacy, Consent
- [Hand-offs](https://health-hats.com/project-type/hand-offs/) - between team members, professional and lay
- [Continuity of Care](https://health-hats.com/project-type/coc/) - between settings
- [Beryl](https://health-hats.com/project-type/beryl/)
- [MGMA](https://health-hats.com/project-type/mgma/)

## Project Attributes

- [Expertise](https://health-hats.com/project-attributes/expertise/)
- [ePatient](https://health-hats.com/project-attributes/epatient/)
- [Caregiver/Parent](https://health-hats.com/project-attributes/caregiverparent/)
- [Lived experience](https://health-hats.com/project-attributes/lived-experience/)
- [Physical environment](https://health-hats.com/project-attributes/physical-environment/)
- [Social circumstances](https://health-hats.com/project-attributes/social-circumstances/)
- [Advocacy](https://health-hats.com/project-attributes/advocacy/)
- [Goals](https://health-hats.com/project-attributes/goals/)
- [Relationships](https://health-hats.com/project-attributes/relationships/)
- [Informed Decision Making](https://health-hats.com/project-attributes/informed-decision-making/)
- [Engagement](https://health-hats.com/project-attributes/engagement/)
- [EMR](https://health-hats.com/project-attributes/emr/)
- [IT](https://health-hats.com/project-attributes/it/)
- [Precision Prism](https://health-hats.com/project-attributes/precision-prism/)
- [Precision Medicine](https://health-hats.com/project-attributes/precision-medicine/)
- [Behavioral Health](https://health-hats.com/project-attributes/behavioral-health/)
- [Surveys](https://health-hats.com/project-attributes/surveys/)
- [Clinician](https://health-hats.com/project-attributes/clinician/)
- [Exceptional children](https://health-hats.com/project-attributes/exceptional-children/)
- [Safety](https://health-hats.com/project-attributes/safety/)
- [medication](https://health-hats.com/project-attributes/medication/)
- [Care Partner](https://health-hats.com/project-attributes/care-partner/)
- [Determinants of Health](https://health-hats.com/project-attributes/determinants-of-health/)
- [Transitions](https://health-hats.com/project-attributes/transitions/)
- [Communication at Transitions](https://health-hats.com/project-attributes/communication-at-transitions/)
- [Practice Management](https://health-hats.com/project-attributes/practice-management/)
- [Pain Management](https://health-hats.com/project-attributes/pain-management/)
- [Leadership](https://health-hats.com/project-attributes/leadership/)

## resource_categories

- [Learning](https://health-hats.com/resource-category/learning/) - data management, research, continuous improvement storytelling, engagement, leadership
- [Settings](https://health-hats.com/resource-category/settings/) - Inpatient, intensive, emergency, surgical, clinic, community, home, long-term, rehabilitation
- [Stages](https://health-hats.com/resource-category/stages/) - wellness, self-care, diagnosis, palliative, chronic care, end-of-life
- [Decision-making](https://health-hats.com/resource-category/decisions/) - Informed, clinical decision support
- [Transitions](https://health-hats.com/resource-category/transitions/) - Hand-offs, continuity of care
- [Determinants of Health](https://health-hats.com/resource-category/determofhealth/) - medical care, individual behavior, physical environment, genetics and biology, social circumstances
- [Advocacy](https://health-hats.com/resource-category/advocacy/)

## resource_tags

- [health](https://health-hats.com/resource-tag/health/)
- [Care Partners](https://health-hats.com/resource-tag/care-partners/)
- [chronic illness](https://health-hats.com/resource-tag/chronic-illness/)
- [decision-making](https://health-hats.com/resource-tag/decision-making/)
- [family caregivers](https://health-hats.com/resource-tag/family-caregivers/)
- [mental health](https://health-hats.com/resource-tag/mental-health/)
- [palliative care](https://health-hats.com/resource-tag/palliative-care/)
- [research](https://health-hats.com/resource-tag/research/)
- [transitions in care](https://health-hats.com/resource-tag/transitions-in-care/)
- [Engagement](https://health-hats.com/resource-tag/engagement/)
- [Lived Experience](https://health-hats.com/resource-tag/lived-experience/)
- [Governance](https://health-hats.com/resource-tag/governance/)
- [Design](https://health-hats.com/resource-tag/design/)
- [Patient Family Councils](https://health-hats.com/resource-tag/patient-family-councils/)
- [Participatory Medicine](https://health-hats.com/resource-tag/participatory-medicine/)
- [EHR](https://health-hats.com/resource-tag/ehr/)
- [Consent](https://health-hats.com/resource-tag/consent/)
- [Clinical Decision Support](https://health-hats.com/resource-tag/clinical-decision-support/)
- [Chronic pain](https://health-hats.com/resource-tag/chronic-pain/)
- [People at the Center of Care](https://health-hats.com/resource-tag/people-at-the-center-of-care/)
- [Male caregivers](https://health-hats.com/resource-tag/male-caregivers/)
- [Empowerment](https://health-hats.com/resource-tag/empowerment/)
- [Determinants of Health](https://health-hats.com/resource-tag/determinants-of-health/)
- [Pain Management](https://health-hats.com/resource-tag/pain-management/)
- [AHRQ](https://health-hats.com/resource-tag/ahrq/)
- [CBT](https://health-hats.com/resource-tag/cbt/)
- [Humor](https://health-hats.com/resource-tag/humor/)
- [Young Adults](https://health-hats.com/resource-tag/young-adults/)
- [Elderly](https://health-hats.com/resource-tag/elderly/)
- [Alcoholism](https://health-hats.com/resource-tag/alcoholism/)

## stakeholders

- [Caregivers](https://health-hats.com/stakeholder/caregivers/) - Lay people who support patients – paid and family caregivers
- [Patients](https://health-hats.com/stakeholder/patients/)
- [Researchers](https://health-hats.com/stakeholder/researchers/)
- [Administrators](https://health-hats.com/stakeholder/administrators/) - Inpatient, outpatient, community
- [Clinicians](https://health-hats.com/stakeholder/clinicians/) - Medical and non-medical
- [Healthcare Workers](https://health-hats.com/stakeholder/hcworkers/) - Inpatient, outpatient, community, non-licensed
- [Payers](https://health-hats.com/stakeholder/payer/) - Government, private insurance, employer, foundation
- [Non-governmental organizations](https://health-hats.com/stakeholder/ngo/) - Education, professional bodies, advocacy, demonstration
- [Employers](https://health-hats.com/stakeholder/emploters/)