Yesterday, I was listening to Casey Quinlan’s podcast, Healthcare is Hilarious: an interview with Victor Montori who wrote Why We Revolt-The Patient Revolution for Careful and Kind Care. I haven’t read his book yet, but I will. The interview on Healthcare is Hilarious is stellar.
Merriam-Webster says a revolution is:
- a sudden, radical, or complete change
- activity or movement designed to effect fundamental changes in the socioeconomic situation
- a fundamental change in the way of thinking about or visualizing something: a change of paradigm * the Copernican revolution
- a changeover in use or preference especially in technology *the computer revolution *the foreign car revolution
One of the things that Victor said was that reformers are important, but healthcare is not designed for health and wellness, care and kindness. The entrenched forces will not fundamentally change with reform. It needs a revolution, a patient revolution. I’ve never been good at putting other people’s labels on myself – I don’t know if I’m a reformer or a revolutionary. During my professional and now activist career, I’ve seen myself as a catalyst for change – sustainable change that continues when you’re gone.
My revolutionary heroes include: Mary Wollstonecraft (sparked the change to allow women to have the right to full participation in society), Mahatma Gandhi (the power of nonviolence and forgiveness), Oliver Cromwell (translating the Bible into English so lay people could read it), Florence Nightingale (invented nursing and used statistical analysis to improve care), Albert Einstein (the theory of relativity changed how we think of time and space), and Rachel Carson (sparked the global environmental movement).
The relatively recent revolutions in healthcare that stand out to me include the discovery of anesthesia, legislation for Medicare, Medicaid, the Consumer Protection Bureau, Patient-Centered Research, and universal voting rights for citizens over the age of 18. Add value-based payment, elevators, asynchronous communication, palliative care, anti-viral medications, precision medicine, synthetic opioids, desalinization of water, mass-produced solar power, worldwide transportation (of people, food, products, and pests), smoking restrictions.
With some revolutions, there’s no going back. Anesthesia isn’t going away. Neither are elevators. Every revolution has unintended consequences affecting some people badly, even lethally. Anesthesia can cause harm. So can elevators, asynchronous communication, and synthetic opioids. Legislation can be undermined or rescinded. Almost anything can be co-opted and diluted. Most revolutions are never-ending projects requiring constant vigilance and advocacy.
In my narrow world frame, I look for the magic levers of best health. What small things make an outsized difference? Obviously, drink clean water, eat just enough, don’t smoke, get plenty of rest, do meaningful work are magic levers. Maybe the revolutions are magic levers, too.
The revolutions that I’ve hitched to are:
- People at the center of care sitting at the tables of governance, design, operations, and learning for research, policy, payment, technology, and care delivery.
- Individual ownership (access to, contribution to, authorization for, and payment for) their own health data.
- People and relationships at the center of care making decisions together for best health.
- Healthcare as a right with universal access.
Note: people at the center of care are patients, direct care clinicians, and the people that support them.
I like to try to predict future revolutions, although my track record of predictions is terrible (I was never going to get married or have kids. I was going to keep my last real job until I was 70 and then I’d retire). The thing about revolutions is that they’re crazy difficult to predict and harder to consciously engineer. I’m old now. I don’t want to run anything anymore. 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!
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 much to do in this sick, sickness industry, it’s easy to feel disappointed and burned out. Fortunately, I’ve made a career of beating low expectations – starting with something truly disappointing and finding the small thing that can have an outsized impact by moving that something a lasting inch. I call them levers for best health. I’ve found that drinking water has the most outsized impact for best health. Anyway, the annual report helps me keep a pulse on the balance between impactful work and stoking my fires while managing my health and having fun. It’s an inspiring strange ride. Thanks for being on the ride with me. I couldn’t do it without the personal inspiration of my immediate family (Ann, Simon, Ruben, Jessica, Kate, Anica, Jacky, Leon, and Oscar) and my friends (Mary Sue, Sue, Michael, Kathy, Fatima, Regina, John, Geri, MaryAnne, and Pat). Read More
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 caring for elders with dementia was the most common thread and topic. Occasionally I heard chatter about caring for children or depression. Sometimes the stories of frustration, exhaustion, and loneliness overwhelmed those of gratitude, survival, and inspiration. It’s hard for me to hear too many of the painful stories and maintain my pathological optimism.
I especially appreciated the session about surviving and blossoming as a couple while caregiving led by Frank and Lisa Riggi – heartfelt, practical, and humorous. 10 Activities to do With Your Spouse Every Year – 10!, Only 10? I ask many caregivers, “How goes your marriage/partnership?” Faces fall. Cathy Sikorski‘s keynote, Preparation, Frustration, and Surrender…Boldness Throughout Caregiving was an intriguing combination of hands-on, funny, and legal. Imagine you’re talking to the Cable Company. Be Bold!
Did you know that a third of caregivers die before their caree? Crazy? Not really. Caregiving wears you down, while caregivers put their caree before themselves. Self-care: I loves that theme. This crowd seemed to self-care better than many.
The entrepreneurial spirit shone. My favorites: Carla Macklin’s Adaptive Clothing; Mekhala Raghavan and Angie Creager’s bathing aids and fall prevention (Waiting for production of their vibrating neuro-responsive fall prevention mat and their wash and vacuum the water shower anywhere system. I’ll try anything for fall prevention for myself and narrow doorway bathrooms are endemic in older homes); Quikiks Hands-Free Shoes (I’m always looking for easy, safe, comfortable shoes); and Shirley Riga’s book, “Tools for the Exceptional Parent of a Chronically Ill Child” published by Strong Voices Publishing. Check them out! I love to hear what works for people. Solutions from the trenches rule! (I receive no compensation from anyone mentioned here.)
I attended as a panelist for The Family Connection: Supporting Essential Care Partners as Patients Transition to Home, with Geri Lynn Baumblatt, Mary Anne Sterling, and Cathy Crookston. Most nightmares I heard at the conference involved transitions to or from medical care. I did hear one story of the transition done very, very well. It can be done. If you’re lucky it’s because one person made a difference. It shouldn’t be luck. Caregiving is hard enough.
Caregivers: How do you manage your marriage? When has BOLD worked for you? What’s the best transition you’ve experienced?
Honor the caregivers. Help the helpers.
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 readmission rates. If a physician’s patients are readmitted to a hospital after discharge more than most physicians, they don’t get the extra payment. There are roughly 1,000 of such quality measures. These quality measures are very important to us – people at the center of care (patients, caregivers, parents, direct care clinicians and staff) – because measurement strongly influences people and organizations who get paid for medical services. Following the money doesn’t necessarily mean better medical care, better health for us, better relationships among our healthcare teams, or better work life for our health professional partners.
I was nominated to sit on a CMS (Center for Medicare and Medicaid Services)/Battelle Quality Measurement Development Technical Advisory Panel (TEP). The TEP had its first meeting in Baltimore last week. I was one of 19 Panel members (and one of two with expertise in all four of the selection criteria -Consumer Perspective, Clinical Content, Performance Measurement, Coding and Informatics). The TEP seeks to improve the process of developing measures. It isn’t trying to develop measures. The good news is that the TEP gelled as a team and the CMS/Battelle leaders seem open to, if not eager for, actionable advice. I am honored to have been asked to sit at this table.
As a Patient Activist and a change catalyst, I appreciate the formidable forces of inertia and the current business realities of the medical care industrial complex. What can little Danny van Leeuwen hope to accomplish? My goal in accepting this appointment is to find one lever that can move the Value-Based Measurement battleship three degrees toward value to people at the center of care. My superpower is to accept what is and go from there. After listening to my esteemed TEP colleagues, my perception of what is is:
- Measures serve to evaluate the performance of individual practitioners (not measure whether patients attain optimal health or how the team is functioning),
- Inertia is heading to further measure specificity by specialty and diagnosis (not toward the patient with more non-medical than medical determinants of health who is more than a sum of their diagnoses),
- Data for measurement exists primarily in claims, diagnostic systems, and Electronic Medical Records (much less patient-generated data and experience/perceptions of people at the center of care),
- Physicians bristle at the idea of being held accountable for anything they deem out of their control (rather than what can I do to contribute to improving whatever?),
- People at the center of care, insurers, and policymakers all feel ill at ease with uncertainty,
- Few, if any, incentives exist for data vendors to integrate their data (So patients, caregivers, and parents using the most health care dollars provide the bulk of communication at transitions in care, if they can do it at all),
- Testing measures in real-life seems to be an almost insurmountable challenge (so the link between measures and what they seek to measure and the link between measurement and value to patients is tenuous),
- Direct care clinicians are stressed and burning out – the proportion of time they spent documenting rather than caring is growing while they feel pressure to increase productivity (rather than technology helping to reverse those trends),
Jeesh. Houston, we have a problem. Read More
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 advocates we want to make a difference and alter the healthcare system for the better. So where do we invest our time, energy, and money? It’s sobering to realize the imbalance here – it takes a lot to participate in any kind of health journey – personal, team or system. We still need to take care of ourselves and our loved ones, do our day jobs, and wash the dishes. We can be pretty unrealistic – our eyes are bigger than our stomachs. Our desire is greater than our capabilities.
So, with 4-5 hours a week and $0 the best we can do is have a specific goal, assemble or join a team that’s fun to work with, make a plan, execute it, check if it’s doing what we want it to do, adjust as needed, and keep at it. And build bridges to people trying to accomplish something similar – learn from each other. It’s the same for caregivers, nurse managers, patient and peer advocates – anyone without deep pockets. It’s some variation of a few hours a week and $little to invest. Read More
I officiated at my 26th wedding yesterday – a young lady I’ve known since she was born. So honored to be asked. Now I’m in DC to meet the few-week-old son of a couple whose wedding I performed several years ago. After the 10th marriage I’ve done, I say to every couple, there’s a minute before which you aren’t married and the next minute you are. What’s the difference? Five of the first ten are still married. All of the rest are still married. Correlation? Who knows?
Life is a series of thresholds. The minute before and the minute after. We transform during thresholds. I relish participating as a minister, a nurse, or as a human in transforming thresholds. Thresholds are intimate and beautiful. It’s love. So whether it’s a wedding, at the clinic’s registration desk, hearing good or bad news, or simply witnessing a life moment, how we engage people over thresholds profoundly affects the experience for us and for them. Be present, appreciate, wonder, make a difference. Thanks.
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 of populations, reducing the per capita cost of health care, and improving the work life of clinicians and staff.
Health information includes the data in our health records (paper or electronic), patient generated health data (PGHD) (vital signs, activity, experiences, symptoms, history, etc.), census and community data, and perceptions collected from surveys, focus groups, and chatter. Learning can be formal and structured as in research and analysis, clinician consultation and advice, education and training, and tests of change as in Plan, Do, Study, Act (PDSA) or informal as in social and traditional media, child rearing, personal experiments (try something, see how it works, try something else), family, neighborhood, and water-cooler conversations. Read More
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 team member and leader I study the puzzle of how people think, emote, decide, and relate trying to get anything done safely and ethically in the most consuming, illogical, nonsensical, complex system imaginable. My palette includes the desire and dilemma of habit change, the tangled web of cultures, the enticing potential and hype of technology, the flood and inaccessibility of data, the vital impossibility of policy change, and the insane contradiction of money surrounding, driving, tempting, confounding health. Can I tease out the simple and illusive filaments of the magic levers of best health? What works, how do we know? How do we find, share, and use evidence? How is uncertainty communicated, how does information about groups of people relate to me, a single person? I love sharing my broad and thin knowledge of health as a coach and a writer. As a person on my own health journey, writing this blog stokes my fire – feeding and renewing my pathological optimism. Actually, I start with a nut of an idea, sit down with that idea on Sunday and write. Takes about an hour. I used to read the drafts to my mom, now my wife. It never turns out the way I think it will. The post writes itself. I’m an old hippie – at the end of the day the health journey is a roller coaster of love. Thanks for the ride. See you next week.
This week my son, Mike Funk, would have been 40. Lord, I miss you, Mike. You still inspire me. You’d be proud of your seasoning family.
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, some with my wife. Got my recumbent trike out, tuned up and rode it. Had to buy some paper Sudoku books. It affects my week as well. I’m looking at the phone less often, meditating more. Still using the iPhone for texts and phone calls-have only received a few. Using it when playing my sax: playing my recorded rehearsals, metronome, etc. Sitting on the bus or subway more often looking at people and not the screen. Noticing the blue sky and spring colors. My grandson freaked out: Will I have to do it too? All week? OMG. He’s relieved that it’s just Grandma and Opa and not him, unless he’s at our flat sundown Friday to sundown Saturday. I’ve spoken to several parents who have 5-7p screen-free every day, others do a 24-hour period as we do.