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Danny van Leeuwen

Pride Falls

By | ePatient, Family man | One Comment

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.

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A Seat at the Table. Now What?

By | Advocate, Researcher | No Comments

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.

Photo by Ken Treloar on Unsplash

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Paying for Value. I’m Overwhelmed. Please Read This

By | Advocate, Caregiver, Clinician, ePatient, Researcher | 3 Comments

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:

Recommendations

  1. 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.
  2. 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.
  3. 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.
  4. 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.
  5. 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.
  6. 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.
  7. 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.
  8. 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.

Photo by Ashim D’Silva on Unsplash

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