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Cinderblocks4 – Medical Advocacy at its Best

By Advocate, Caregiver, ePatient, Informaticist, Leader, Musician, Researcher

 

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 to solve local problems that matter to them.   50% of the 30 presentations were literally local – from Garrett County and immediate vicinity. The rest came from as far as France and LA, Oklahoma, Texas, Boston, and DC to learn what works for each other. A sample: Read More

Precision Prism

By Advocate, Caregiver, ePatient, Informaticist, Researcher

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. My problem is to understand what my mother wants for herself and to track who says they’re doing something for her (including my mother and me), what they’re doing, and when they’re doing it. I want to know what it takes to do it (Can she afford it? Can she get there? Does it agree with her? Who will be with her? etc.). I want to know if the actions have the effects we thought they would. I want to know what her risks are and how we plan to prevent or respond to them. I want to able to keep track of all this and keep it current. I want to share it or have it shared from day-to-day and from setting to setting even if I’m not present. Read More

Resist, Fund Me, Change, Join, Decide, Click, Lead

By Advocate, ePatient, Informaticist, Leader, Researcher

 

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 to take out the garbage and do the laundry. Do I want to respond? Am I able to respond? What am I really responding to? How much is enough? Does it align with my mission? Will it be fun? Read More

Need a recharge? Listen for what works.

By Advocate, Caregiver, ePatient, Family man

 

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 be a bitch in the best of circumstances. Yet, good partnerships make me high – the partnerships with my honey, my work teams, in music groups, with the anonymous one-time chance encounter and yes, with my health teams. Read More

Personal Health Goals

By Advocate, Caregiver, Clinician, Consumer, ePatient, Family man, Uncategorized

 

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 are well want to stay well.  Those who are acutely ill (cold, broken leg, stomach ache, etc.) want to get over it. Those who have chronic conditions want to manage as best as possible. Here’s a stab at a list of personal health goals. Read More

Health Hats – 2016 in Review

By Advocate, Caregiver, Clinician, ePatient, Family man, Informaticist, Leader, Researcher

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 into a room of experts in their fields – clinicians, researchers, policy makers, techies, insurers, executives, I think, What am I doing here? I’m way over my head. It takes two minutes to understand that I’m the connector of their considerable expertise to the workflow and life flow of patients, clinicians, caregivers, and staff. I’m also the translator among their jargons. I can shift the conversation by offering a voice for some experiences of patients, caregivers, and clinicians.

I’ve refined my work this year as a connector, translator, and advisor while working as a technical expert in patient-centered research, behavioral health information technology, community health, and health payment innovation. I’ve benefited from the warm embrace of Wellesley Partners during this transition year after leaving my 40+ years as an employee and boss.  I am grateful that they believed in me and helped me polish a few rough edges of inexperience. I also appreciate the counsel of many – Doug, Geri, Pat(s), Juhan, Bevin, Eve, Jarred, Keren, Jonathan, Sarah, and Lauren to name a few. You all know who you are. Thanks. I’m grateful for the many inspiring people in the patient/caregiver/clinician experience space. Thanks for all you do. You keep my embers glowing. Read More

What Works? Outside the Box

By Advocate, ePatient, Researcher

Outside Of 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 Center Outcomes Research Institute) about the challenge of following up with people using medications in off-label ways (no formal evidence, many experiments of one).  The thing about evidence is how does evidence happen when there is patient and/or clinician creativity? People try something, it helps. They share on @PatientsLikeMe,@mypatientsMatch or social media. Someone else tries it. It helps some and not others. How does that experience turn into evidence? A challenge is that such data is either not collected or so spread out that it can’t become evidence. Plus, it’s tough to collect data about how stuff works. How can studies be done about people after they feel better? Read More

An Experiment of One

By Advocate, Caregiver, Clinician, Consumer, ePatient, Leader, Researcher

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 massage therapist to talk to each other, but not my doctor. They’re all helping me with my neuropathy pain.

My doctor tells me that if I get this surgery I’ll have a 10% chance of living longer and 1% chance of serious complications. What does that mean for me?

The doctor told my mom that she can’t drive anymore.  How will she get her groceries, her meds, to her doctor appointments?

Who will feed my cat if I have to go to the hospital?

I live 4 miles up a dirt road. Will I be able to stay in my house? 

 

It’s complicated to manage health and wellness. Planning and living care is daunting. The journey occurs inside and outside of the medical space. Sometimes we travel alone and sometimes with our care partners and health team. Always within our communities. The journey is our life – one foot in  front of the other, with expected and unexpected, desired and undesired forks in the road. We can wing it or look for a map. We have evidence of what works – sort of and sometimes. The evidence is about specific routes for groups of people. You and I may be on an unusual route. You and I are not groups of people, we are one person in many groups.  Once a person decides or needs to feel better, a roadmap helps. A roadmap plus stopping periodically to check if you’re still heading to your destination. Read More