I took my foldable electric wheelchair solo on my trip to Philadelphia this week. My last solo wheelchair experience was in New York City in 1977 when I took a course at NYU’s Rusk Institute of Physical Rehabilitation. On the second day of the two-week course, I spent the whole day in a wheelchair by myself. It was terrifying. I got stuck in a pothole crossing Fifth Avenue during rush hour. The ground rules were, never get out of the chair. A homeless woman ran over and pushed me across before I got run over by the honking yellow cabs. On Tuesday, in Philly, I got stuck again in a small sidewalk pothole and a man, sitting on the curb with an “I’m homeless” sign came over and pushed me out. I saw him again on my way back from the restaurant. I handed him $10 and thanked him for helping me. He wouldn’t take it, I was just helping you out. I thanked him again and told him, you helped me and now I’m helping you. He took it. Read More
My recurring mind loop these days is non-traditional patient, non-traditional patient, non-traditional patient. I heard it repeatedly while attended a one-day symposium, Putting Patients at the Center of Research: Opportunities for Ethical and Regulatory Oversight at
Harvard Law School’s Petrie-Flom Center. See a great report written by Andy Oram about the symposium here. The symposium showcased a PCORI (Patient-Centered Outcomes Research Institute)-funded study about patient involvement in research in non-traditional roles (not the subject*). The study actually focused almost exclusively on Institutional Review Board (IRB) perceptions of patients in non-subject roles. Interesting focus since the role of the IRB is to protect patient rights in research studies as subjects, not other roles.
*Please note: Subject is a loaded word for some. They say participant rather than subject, a more egalitarian term. I’m sticking with using subject because I’m introducing the label of Participatory Research. I don’t want to confuse the issues.
No one’s ever accused me of being a traditional patient and I’m not defensive. Right:) You know I’m heavily involved with PCORI whose reason for being is to fund research that matters to patients and will benefit patients. It’s odd that a PCORI-sponsored study would label anything a person does who is not an academic and not a subject of a research study as non-traditional. The roles the study refers to as non-traditional are membership in the research team as an investigator, advisor, consultant, recruiter, or disseminator. It seems that the study started with a bias when they called other roles, nontraditional, rather than, say, non-subject roles. It didn’t call researchers who include patients in non-subject roles, non-traditional researchers.
My patient/caregiver activism rests on a foundation that patients and caregivers should have a seat at the table for governance, design, operations, and learning of healthcare policy, planning, delivery, improvement, and research. It makes sense that much of the research industry feels like a fish out of water with patients in their midst. Perhaps labeling (non-traditional) is a reflection of their acute discomfort with other. We call people of the Navaho nation whose ancestors lived in the continental US before the Puritans, American Indians. We call people who emigrated from China during the California Gold Rush, Chinese Americans. Yet, I’m white, first-generation American. I’m not called Dutch/German American, just American. Perhaps when many researchers think patient, they think someone wearing a hospital gown with their butt crack bare, not skilled, insightful, hardworking, curious, passionate people like themselves. Other.
As a reviewer of PCORI funding requests and co-chair of an Advisory Panel, I’m fortunate to be part of a leading edge of culture change in the human research industry: Participatory Research. I have seen research teams with patient/caregiver stakeholder Investigators and Advisors paid on equal footing as the academics. I’ve even seen respite care budgeted for carees of caregivers, so they could free themselves to participate in any role. Culture change seldom occurs by waving a magic wand. Rather it moves in fits and starts as the bulk of researchers follow Participatory Research early adopters. Early adopters see participatory research as a no-brainer. Those that follow feel like they’re putting round pegs in square holes. They question the capacity, skill, and confidentiality of lay people in research team roles. They think patients need to be protected, that they need to become more research literate. A great research team has members with statistics and methods expertise, recruitment expertise, project management expertise. Often with less experience with patient/caregiver life flow and direct care clinician workflow. They seldom require life experience training or statistical training for those without such experience. However, everyone, no matter the role, needs to have documented understanding of the rights of subjects and confidentiality of individual data.
I appreciated the presentations at the symposium of three patients (Jane Permuller, Marty Carney, and Paul McLean) in non-subject roles highlighting the benefits of patient participation in research. I also respect Harvard Law School’s Petrie-Flom Center for scratching the surface and reminding us (me) that the spread of participatory research is in its infancy and we activists have much work to do.
Alice’s blood pressure is 110/50 right now. That’s a data point. Her blood pressure, untreated, lives around 150/90. She’s prescribed medicine for it, but she ran out last week and doesn’t get paid for a few more days. When she stands up, she gets sweaty and feels like she might pass out. That’s a bunch of data and a story. Hopefully, the data and the story are given meaning (processed, analyzed, interpreted) by someone with Alice who has medical experience and skills and leads to information about her safety. Alice might have orthostatic hypotension. She probably should sit down, for now, refill her prescription, and get some medical help.
So, the 110/50 (a single data point) doesn’t mean much by itself. Multiple data points + stories, when processed, can lead to information. Information leads to choices which can result in action. Data and stories about Alice are collected by her, others, and machines. She might be able to interpret data. So can others and machines. Most action taken as a result of information about Alice is done by Alice. She can’t write a prescription, but she can take it. She can sit down and elevate her feet. She can seek medical treatment.
Some people and their clinicians are drowning in data and can’t breathe, let alone learn from that data. My OpenNotes record from my neurologist is full of data. Unfortunately, even as a nurse, I understand very little of the note. I want some simple information from the note. How am I doing? I have a progressive disease that will get worse. Am I getting worse? Five pages of data in a note and I can’t tell. I asked my neurologist to explain it to me. He did. Took about three minutes. Turns out the Expanded Disability Status Scale buried on page 4 was the key. I have moved from 5.0 to 5.5 on the scale in the last two years. He used it to support my claim for disability payments. But wait, that’s not right, I can’t walk 100m without my cane. Oh, he says, then you’re a 6.0. Worse than he thought, but now we know. That was an example of missing information (for me) and erroneous information (for him). Let’s not forget biased information. That’s a subject for another day.
The person-clinician relationship feeds on a two-way loop of data, stories, and action about the person receiving care and support. The art for my clinician team members is to help find, share, and interpret data about me and about groups of people like me (old, affluent, white men with Multiple Sclerosis, high cholesterol, food on the table, who have insurance, a home and family), combine them with stories about me, to help me make sense of it all. So I can do something with the information that makes sense to both of us.
So, I still want my DaM Data (Data about Me). But it’s no good without transmogrification (great word!) into information that I can use.
Best Health depends on relationships -relationship with my health team, my relationship with myself. We can accomplish much in these Best Health Relationships. We take stock, tell stories, complain, report, plan, decide, learn. These relationships impact our spiritual, mental and physical health. Relationships take time. Time as in arriving (scheduling, traveling), being present and accomplishing something (catching up, problem-solving, planning what’s next). Time is key to these Best Health Relationships. Early on in relationships, to establish a connection, a language, a trust, in the relationship, it’s either longer spans of time at each sitting or more frequent sittings.
During my first visit with my neurologist, he said, I know a lot about drugs and therapeutics for Multiple Sclerosis, but I don’t know anything about you, except your brain scan. My job is to get to know you. Your job is to learn about Multiple Sclerosis. Our visits were often long – 45 minutes, an hour. Soon we developed a short-hand and routine. What’s on your list? This is on mine? Wait, I think we missed one thing on your list. OK. We decided I’m going to do this, you’re going to do that. Text me to let me know how it went. Ten-fifteen minutes tops. A new clinician starts the cycle over. Build a relationship. Sometimes there’s no chemistry. Then the time (of any length) is mostly wasted, ineffective, especially if I’m in any distress, which is often. Read More
Everywhere I go it’s patient-centered this and patient-centered that. What does it even mean? It doesn’t take long for buzzwords to wear thin (patient engagement, silos, gig economy, NexGen). Don’t me wrong. I wholeheartedly support Patient-Centered Outcomes Research Institute (PCORI) and the Patient-Centered Clinical Decision Support-Learning Network. I subscribe to Picker’s Eight Principles of Patient-Centered Care.
I also endorse the IOM (Institute of Medicine) patient-centered definition “Providing care that is respectful of, and responsive to, individual patient preferences, needs and values, and ensuring that patient values guide all clinical decisions.”
Once something becomes part of popular jargon and media I can’t help but re-evaluate what I mean and what others mean. When I’m invited to sit at a governance, design, operations or learning table I ask, What do you mean by patient-centered? Invariably, people assume what others mean and actually have different definitions (or often, none at all). The most common definition people say is, patients are in the middle of everything. Well, they’re not. I can’t even picture the design challenges of patients in the center of everything. I am in the middle of everything for me. That’s complicated enough. I’m learning that being self-centered means taking care of myself and standing up for myself. I’m responsible for doing the work to understand and communicate my preferences, needs, and values. I’m responsible for respecting myself. I’m pretty good at that, but I could be better. I need my whole team to understand their preferences, needs, and values, respect themselves and take care of themselves. I need them to keep up with the skills and knowledge of their specialty or role. Stronger team members make for better collaborators with more respect overall. I’m going to have better health in the long run when clinicians stand up for themselves and struggle with the oppressive business of health care. I’m better off when they are less burned out and have more time for me and themselves. I’m better off if they’re self-centered and take care of their jobs – knowing and communicating choices to me. Read More
I’m sensing a harmonic convergence for data control by patients and their trusted licensed clinicians through Open Source. Could a Give Me My DaM Data revolution be upon us?
Give Me My DaM Data (Data About Me) has been a rallying cry of the ePatient Movement (ePatient = Empowered, Engaged, Equipped, Enabled) for quite a while. At the same time, physicians and other licensed clinicians express increased frustration – no, outrage – that the electronic health records support billing, not clinical care. See the National Academy of Medicine’s Care-Centered Clinical Documentation in the Digital Environment: Solutions to Alleviate Burnout.
For me, Give Me my DaM Data means
- Data that matters to me
- Data that I can understand
- Data that’s correct
- Data that I control
- Data I can use to make decisions with my licensed clinicians
In short: Everyone with permission from me sees the same correct, up-to-date data set.
Today, let’s consider #4 Data that I control
- I can access it easily
- I can track who or what is trying to see it, actually sees it, adds to it, changes it (history of use)
- I can give and withdraw permission to whom I want
- If there’s money to be made from it, I get some of it
Right now, data about me is controlled by EHR and health app vendors, hospitals, insurance companies, government, and companies with a business model that sells data about me – not me. Read More
I’m ready to quit playing my horn. I can’t seem to bring what I’ve learned while playing at home (practicing) to rehearsals. I’m lost. I have fat fingers. I can’t find a 2 or 4 measure rhythmic pattern that works. I lose my place. I can’t seem to learn the language. I definitely I don’t have the muscle memory yet. It’s disheartening. I’m used to being good at what I do. I was a great bedside nurse. I was a really good boss. I’m a prolific and engaging writer. I’m sought after for my patient/caregiver activism. Music, not so much. I’m persistent, not talented. I’m humbled, playing music. Part of the secret sauce to managing my Multiple Sclerosis, is that I keep manageable stress to a minimum. Being a boss and employee was too stressful, so I stopped. I don’t have secrets. My close relationships are fresh and up-to-date. I adapt well to my slow reduction in function. Playing is stressing me out. Wait, I haven’t had a sax lesson in months. My teacher is very good. Positive and creative with my fluctuating abilities. Tells me to play less. I didn’t stay at the top of my game in my 40+ year career without coaching and mentoring. It wasn’t possible. I play for a reason. It’s one of two outcomes I track with my doctors (falling and playing the saxophone).
I’m not quitting. Thanks for listening.
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!
I fell in New Orleans a couple of months ago flat on my face. No injuries, scraped my hands and arms. Freaked me out a bit and my friends. A week later, back home, I fell again. Same thing. My primary care doc and neurologist always ask, have you fallen? Falling is one of two outcomes we track together. (The other is, are you still playing your saxophone?) It’s been a long time since I’ve fallen. Outside. A year or more. I had to stop shoveling snow. I didn’t mind falling in the snow. Kind of fun. Worried my family, though. I do fall inside when I’m turning suddenly, like in the pantry or trying to vacuum. I’m starting to be a bit alarmed about this increased falling. I stumble a lot normally but always catch myself. This is stumble and fall. Not good. I worry about it at 2 am the apocalyptic hour. Otherwise, I’m pathologically optimistic and flex my superpower: accepting what is.
I met a buddy (we’ve been dear friends for more than 40 years) in Washington recently. He wanted to go to the National Gallery. He suggested we rent a wheelchair. I’ll push you, then we can spend more than 30 minutes looking at the paintings. He knows that my sightseeing endurance has been steadily decreasing. We spend more time to rest me each time I see him. I was reluctant.
My wife wants to travel. I’ve been resistant. I just don’t have the stamina anymore. I’ll be a drag. But, I love having adventures together (the nonhealth-related kind).
After the falls, I was in Baltimore for a meeting. I was telling a colleague about my falls. He uses an electric wheelchair, collapsible, with a joystick. He said I should consider getting one. He’s an amputee. He can walk most of the time quite well. Often the wheelchair will spend four months at a time in his garage. He doesn’t need it. But traveling can be wearing. It collapses and he can gate check it on the plane. Weighs 50 pounds. Folds with the pressure of one finger into the size of a medium size suitcase. Has a range of 14 miles. It’s 23″ wide. I’m intrigued. As a habitual doer, I bought one two weeks ago.
I feel like a charlatan. I can walk. I’m not paraplegic, I didn’t have a stroke. My chiropractor said, as long as I keep up my 3500-4000 steps a day, think of the wheelchair as an extender, not a crutch. What’s wrong with a crutch? I use a cane. Anyway, I’m testing it out. I’ve been aware of community accessibility issue for a long time, but now I appreciate every slope, every intersection, every pothole and crack, every lip that’s greater than one and a half inches. I’ve had to get out of the chair and right myself several times. That feels ridiculous.
When my mom starting falling, I suggested that she get a cane. Oh no, honey. That would be silly. I don’t need a cane. It would look ridiculous. I said, Ma, I use a cane. Do I look ridiculous? She replied, oh, no honey, I’m so glad you’re safe. It’s a great accessory for you. No irony.
So, anyway. Sigh. Soon I’ll be comfortable enough motoring around in it. (I need to give it a name). Next, I’ll have to take it traveling. Ok, maybe I’ll feel a bit ridiculous. Pride recedes, Europe on the horizon.
Walking in the door, I look around me. Who are these people? What am I doing here? I’m not an academic. I’m don’t represent a national advocacy organization, a health system, or insurance company. I don’t work for pharma. I don’t represent an EHR vendor or software startup. I’m not a techie. I’m not, I’m not, I’m not. I’m just little Danny van Leeuwen. Yet, I’m finding myself sitting at several tables – research, data privacy and access, measurement, design, palliative care, behavioral health, policy – as a patient/caregiver scholar or stakeholder or activist. It’s been a heady, nerve-wracking, sober, and awkward process.
A core principle of my advocacy: People at the center of care (patients, direct care clinicians, and those that support them) need to sit at the tables of governance, design, operations, and learning in all aspects of healthcare research, delivery, and policy making.
Thank goodness I salivate standing in front of the complex Tower of Babel. In a weird way, I welcome the nonsensical business puzzle of sick care. Every tribe represented around the tables has a different language, all, apparently, in English. My first tasks are clarifying purpose and audience, inventory related efforts to-date, and figure out the one thing above all else that I want to accomplish at this table. Whenever I don’t understand, I ask. What is an artifact? What do you mean by patient-centered? Who pays? Who cares? I propose definitions in my own words, words I think lay people might get. I tell my colleagues that I need to be able to write about it for you.
Next, I develop relationships and build trust. It’ll surprise you to know I’m an extrovert (Myers-Briggs ENFP if you go that way), so it’s natural for me to build relationships. The best way for me to build trust is to take on tasks and deliver on time. And listen more than I talk. That’s work for me since I like the sound of my own voice. I prepare, do my homework, read everything provided in advance. Again, I bring one goal to accomplish in the upcoming meeting. When I feel small and intimidated, I think of the mouse, Jerry, of Tom and Jerry cartoons. (Does that date me?) I lean into the feeling of intimidation.
Broadly, I look for more opportunities to bring other people at the center of care to this and subsequent tables. I set my expectations low, so I can be delighted when they’re exceeded. We don’t have to hit it out of the park. I relish any humor and irony I stumble upon. It’s a fertile field. If I’m feeling crabby or hopeless (more than the normal anger at our sorry state of healthcare delivery), I back up and take a break. Play music, meditate, exercise, spend time with family, space out. Self-care first. If I feel disrespected, I’m out ‘a there.
Mostly, it’s fun, fun, fun. People care, people want things to be better, people want to accomplish something. People have hope. I hope we’re moving a battleship three degrees. I know it needs to turn at least 45. Play the long game even if you’re a short-timer.