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
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.
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.
As you may know from previous posts, I sit on a Center for Medicare and Medicaid Services (CMS) panel about Quality Measurement Development: Supporting Efficiency and Innovation in the Process of Developing CMS Quality Measures. Jeesh! What a mouthful! In English, for me, this means, if Medicare is going to pay for value in health services, what is value? How will value be measured? How will value measures be created? And, should we care? We (people at the center of care – patients, clinicians, and those that support us) absolutely should care. First of all, we are the ones who are actually paying. Medicare, Medicaid, and insurance companies write the checks, but their accounts are filled by us as taxpayers and employees. The more money spent on healthcare, the less money is spent on our wages, public health, safety, everything. Hospitals and professional practices respond to how they get paid more than anything. When they are paid for volume – more treatment, surgery, days, and visits – they do more since it means more money for them. We know that more does not necessarily mean better for our health. The healthcare industry is creeping toward paying for value, not volume. Value should mean better medical care, better health, better relationships within our health teams, and better work life for those of us that are professionals. The definition and the measurement of value become critical. An example is readmission rates. Volume is paying for every admission. Value is not paying for a readmission to a hospital within a certain number of days. There are roughly 1,000 of such quality or value measures.
I want to share with you some of the recommendations made by the technical expert panel so far (this is from the second of four all-day sessions). You can find the full report from the January meeting here on the CMS website, but it’s hard to get to the report, so I put it here to make it easier. I’m listing the recommendations below with my interpretation in italics of what they mean. Nobody at CMS or Battelle or the Panel has endorsed my interpretations. They’re all mine. But it’s no good if you don’t know what’s going on and I’m not sure if reading the report will help. So, here goes:
- Institute a governance process to help plan, develop, and manage shared measure testing resources. Measures need to be tested to see if they work. Working means that they measure what we want them to measure, that they measure the same thing every time, and that it makes sense. People developing measures use large sets of data to test to see if the measures work. Many organizations suggest measures, measure the measures, and publish the measures. This recommendation says that there needs to be a governance process (a clear and understandable way to make decisions) about how measures are tested. Right now measures are mostly tested using claims and electronic medical record data. It’s not enough. Data from patients and the experience of patients and clinicians are important too. We don’t have much experience with using this kind of data for value. Lots of decisions ahead of us.
- Incentivize participation in measure testing. Everyone who creates measures won’t test measures out of the goodness of their hearts or because it’s the right thing to do. Incentives encourage people to test measures in new ways. Incentives for organizations can be similar to incentives for people. I am more likely to do something if it’s easier than not doing it; if it’s required with a penalty if I don’t; if people give me credit for my work; if I get paid or a discount on something else; if I get more business if I do it. You get the idea.
- Promote data element standardization and education. Measures are made up of data elements. A very simple measure is the fraction of females in a group (55% of the group are females). But it’s not so simple. How do you define the group and how do you define the data element, females? Is a female a person that can bear children, has two X chromosomes, self-identifies as female… What’s important with measures is that everyone using the measure defines it the same – there are agreed upon standards. A requirement to make the definitions and standards available for anyone to see helps too. Nothing hidden.
- Implement a framework with a long-term plan on how CMS will approach measurement. Changes to the way measures are developed won’t happen by waving a magic wand. It takes time and effort by lots of people. Some things tried, won’t work. Something else will need to be tried. It takes a long-term plan, like retirement. We need a picture of how the plan will move along and adapt to new knowledge. That’s the framework.
- Institute an acceptable “quick path to failure” mechanism in the measure development process with well-defined steps. Developing measures is expensive and time-consuming. Whenever new things are tried, some don’t work. We don’t learn to walk without falling. We need to know that something isn’t going to work as soon as possible so we can try something else. But if people are going to “fail early” they need to know how to do that and be paid for the work they do, even if it doesn’t turn out as expected. Again, incentives.
- To facilitate development of cross-program measures, consider a different organizing structure for measure development contracts/projects that cuts across programs. Right now, most measures are diagnosis-specific for one setting (home, hospital, nursing home). But people aren’t their diagnosis and they spend time in many settings. Measures across diagnoses and settings are hard to develop. The science is young. They’re different and should be managed differently. As a patient, I care about this a lot.
- Provide funding for the development and implementation of a national testing collaborative. Changing how we develop measures is expensive and a risk. The government should pay for some of this experimenting with testing. It’s an incentive.
- Develop an objective scoring system to evaluate measure testing concepts that are currently assessed subjectively such as importance, burden, and feasibility. Changing how measures are tested could end up like the Wild West- shooting from the hip, pretty wild, with those having big guns controlling the town. Having a scoring system (more points for helping patients and clinicians, more points if it’s easy to do it in many places, more points if I can do it the same way after you figure it out) really helps manage these new ways of testing measures.
Overwhelmed? No wonder. Me, too. I’m sitting at this table because I think it’s important stuff. I appreciate that CMS cares and included me. I respect the knowledge and passion of those around the table and they respect me. It’s government at its best. It helps when you understand this too. Even a little bit. Please ask questions, comment, and share. We’re pretty smart but not as smart as we think. We need your smarts.
I’ve told my teams over the years, if we don’t fail several times a week we’re not pushing the envelope and not doing our jobs. We weren’t tightrope walkers, pushing IV meds, or manufacturing artificial joints. We were innovators, learners, and leaders. Failure as a virtue is a hard sell – to almost anyone. My teams, my colleagues in leadership, editorial review boards always start by thinking I’m crazy. Sometimes they eventually get it, sometimes not. Leadership usually wants to get A’s. In one health system I worked for, I reported that we successfully completed medication reconciliation in 40% of admissions. OMG, that’s awful! They said. No, I said, that’s great! We’re failing. Let’s succeed. In 18 months we completed medication reconciliation 70% of the time. It’s a lot harder to go from 70% to 80% than 40% to 70%. In research, we don’t publish when the study doesn’t prove the hypothesis. Yet, not proving is as important, if not more important, than proving. I was on an Editorial Review Board once that decided to solicit articles where the hypothesis wasn’t proven and something was learned. Over a 10-year span, we solicited exactly 0 such articles. Zero!
A definition of failure to some is the opposite of success. Not necessarily. Especially when it comes to learning and getting healthier. We don’t tell kids they fail when they fall learning to walk. They keep trying. Same with learning to talk. As an adult, I find failure a motivator to try again. As a thinker and a catalyst for change, I’m delighted when I succeed with 30% of what I try. It’s been the rare boss that’s accepted that. They’ve been the best bosses and we’ve done the best work together in my career.
For health, embrace failure. I did eye exercises twice a day for 8 months before my brain rewired and my crippling double vision cleared 80%. That’s 360 failures and one success! It’s taken years of trial and error to land on a balance, stretching, and strengthening routine that works for me. I stumble a lot, fall infrequently, and sustain only minor injuries when I do. I get frustrated when I see failure and stuck in the muck. Fail and try something else, that’s the ticket.
Failure flavors humility and empathy. My best stories are of failure – my failures. People laugh with me. We can all relate to failure. It’s the warp of our lives. Hearing about a failure, we naturally ask, and then? What happened next? What did you learn? What did you try? What eventually worked?
So, failure, persistence, and humor are inseparable cronies. Keep trying and chuckle at the absurdity. That‘s life, health, music – anything worth doing well. Persist and laugh. Eventually, who knows?
My wife and I spent some time trying to adopt a teenager after our son, Mike, died. We chose the adoption agency because, with them, the child made the decision whether or not to be adopted by us. The teen with whom we developed a relationship decided not to be adopted by us. Hard for us, but success for her! Empowered adoption. The clowns of Laughter League at Boston Children’s Hospital poke their heads in the room, May we come in? When the child says, No, you can’t come in my room, it’s success! Empowered hospitalization. Katherine Treiman at RTI shared an article with me about self-dialysis, Is “Empowered Dialysis” the Key to Better Outcomes? People connect themselves to their machines, draw their own blood, clean up the dialysis equipment themselves. More training time, lower mortality rates. Empowered dialysis, empowered hospitalization, empowered adoption. Wow. Radical. Controlling our own lives. A person, not a patient. What a thought. I know the fatigue and stress when I feel powerless. My MS symptoms are much worse. I feel better when I’m in control. What I really like about empowered decision-making is that it doesn’t matter what decision is made. The physical, mental and spiritual benefits of empowered decision-making and care may be tough to measure. Is that because we don’t measure it or because we don’t know how to measure it? Still, we should practice it, appreciate it’s wonder, and learn to measure it.