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Caregiver

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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Failure is Under-Rated

By | Advocate, Caregiver, ePatient, Leader, Musician, Researcher | 2 Comments

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?

Photo by Nik MacMillan on Unsplash

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Activated patient, nurse, with engaged doctors. Can’t reliably manage meds?!

By | Caregiver, Clinician, ePatient | No Comments

My medication lists don’t match and none of them reflect what I actually take. I have received doctor visit print-outs and seen on-line summaries in five doctor offices and two infusion centers in the past year. Each place does some sort of reconciliation at each visit. In one, a medical technician asks me what I’m taking while looking at the screen, making changes. I say I don’t take that anymore. That one’s as needed, but I haven’t taken it since my last relapse. That was stopped years ago and taken off twice before, etc. The doctor reviews the resulting list.  When I check the portal after the visit, some changes aren’t reflected. Other offices print out a list and ask me to write changes and return the list.   The lists don’t reflect the changes I made last time. No surprise – the portals don’t reflect any of the changes. Another asks me while looking at the EHR, this compounded medication isn’t on our list, we’ll leave the non-compounded version (a doctor in their system prescribed the change and directed me to a pharmacy to have it filled). One doesn’t allow my twice-a-year infusion to be listed as such (only allows the number of times a day). I have a moderately simple medication regime taking 4-5 prescribed pills and salves, twice-a-year infusions, plus 3-4 over the counter medications with three as-needed (PRN) meds. I use two local pharmacies, a mail-order pharmacy, and a compounding pharmacy, depending on which has the lowest out-of-pocket cost. I’ve never had an inpatient hospitalization. Read More

It’s not so simple – making treatment choices

By | Advocate, Caregiver, Clinician, ePatient | No Comments

We (patients and clinicians) need all the help we can get making informed health care decisions. We need the right information to the right person, in the right format, through the right channel, at the right time in our life flow and workflow – The five rights. Let’s take managing acute pain as an example. Clearly, we need to make some decisions together. I (the patient) am in pain for whatever reason – hurt my back, migraines, colitis, sickle cell, a million reasons. I (the clinician) need to help my patient manage that pain with the least long-term risk possible, e.g. relief with maximum function without addiction, constipation, confusion, whatever. This pain could be new – never had it before, or familiar – chronic (we have experience with what works and what doesn’t). Clinical decision support can help us to structure and inform a routine to make choices based on research and clinical and life experience. What has worked for groups of people (those with acute back pain, migraines, colitis, sickle cell) and what has worked for the individual (me or my patient)? We can welcome this decision support when symptoms first occur, when the patient and clinician first communicate, when they first meet about the symptoms, or as we try treatments until the pain goes away or is manageable – anytime from first pain to living with pain to no pain. Read More

You 2.0 – Branding

By | Advocate, Caregiver, ePatient | No Comments

Opa, what do you do? I’m a patient activist. What’s an activist? An activist is someone who advocates for social change. What’s an advocate? An advocate is a champion. When I write, speak, and talk with people about health, I’m advocating. What’s social change? Social change is a better life for people. I think people – including you – have the right and the responsibility to be as healthy as they can be. I call this best health. I’m a champion for best health. Why do you call yourself Health Hats? I wear many different hats: I’m an Opa, a patient, a caregiver, a nurse, an informaticist, a leader.  I wear lots of hats.  You do like hats, don’t you?! Yes, I do. And it’s recognizable. When people hear Health Hats, they think of me. People often ask me, Why Health Hats? It’s a great conversation starter. Read More

Trust

By | Caregiver, Clinician, ePatient, Family man | No Comments

I trust my primary care doc.  I trust my neurologist. I trust my instincts. I trust my gut. I do. I trust my wife. She trusts me.  That certainly doesn’t mean that we don’t question almost everything each other says. Trust is not blind faith. Trust is NOT no second opinions. Trust is for when I’m in a crisis and I can’t think clearly, I will listen to my immediate family and my two lead docs (in that order) and I’m likely to do what they recommend… unless I’m unsure. Trust is for when I need to make a decision but can’t or don’t want to. And these are all people’s opinions about what I should do with my life. I know I should lose weight. People I trust say I should lose weight.  It takes a certain alignment of the stars for me to lose weight. I lost 30 pounds eight years ago when the stars were in alignment. They were in alignment again three weeks ago. I’ve started to lose the same 30 pounds again.

I’ve questioned my primary care doc about taking cholesterol-lowering meds.  She wants me to take them. I’m not so sure. The evidence appears pretty clear. I’ve been taking them for nine years because I trust her. Now with Medicare, they’re going to cost me more. It has me thinking again.  I still trust her.  I’ve stopped taking them.

I trusted my doctors for twenty-five years as they worked me up, over and over, for cardiac issues.  Now I know I have multiple sclerosis, not heart disease. I’m a trusting fellow until I’m not.

A friend of mine had breast cancer. She asked her doctors, “Should I take chemo?” They all said yes. She trusted that they wanted the best for her, but wondered where their trust in that advice came from? Was their research current, reliable, and apply to her as an individual? She did the chemo.

Webster says, Trust = you can rely on the integrity, strength, or ability of a person or thing. Trust is respect + communication + context. Making choices about your health in a bed of trust is hard enough. Making choices in the swamp of distrust can be crazy making.

As a person, I try to build trust – in relationships. It starts with being trustworthy. I feel better in that bed of trust. Still, trust in myself, ourselves, is key. Ultimately, it’s our lives.  We face the consequences of our decisions. I’m greatly relieved that I trust I can adjust and make a different choice if the one I made didn’t work out. Trust.

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Reading the Room and Yourself

By | Advocate, Caregiver | No Comments

Sometimes I feel like I’m part of someone else’s play. Just dropped in. I don’t know my lines, I don’t know the other characters. I think I’m in a drama, yet it feels like a farce. The stage is ever changing. Have you seen those round, rotating stages where the props keep changing? I think I’m playing myself, but I’m not quite sure. On top of it, I feel like crap, I’m exhausted, I’m cranky. I exit, stage right, left, whichever. What just happened? What do I do now? Oh yes, time to live life again.

When I worked at Boston Children’s Hospital, I took a class from the Big Apple Circus clowns. These are people who go from room to room visiting kids and their parents or go to scary procedures with them and help them feel better for a couple of minutes. The class was on reading the room. Sizing up the characters, the dynamic, the vibe in the room and then selecting a path forward. The kid is hurt, angry, and withdrawn. There’s tension between the hovering adults. What can you do? In seconds they insert themselves, do something odd or funny, draw out the child, and break the tension. Read More

Health Hats: Reflecting on 2017

By | Advocate, Caregiver, Clinician, Leader, Researcher | No Comments

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

A Fish Out of Water

By | Advocate, Caregiver, Clinician, ePatient, Leader | 2 Comments

When I went to an inner city Nursing School in 1975, I was a 19-year old hippie white boy from the suburbs in a class of 150 mostly mid-aged African American women (one other guy).  I felt like a fish out of water. When you’re admitted to the hospital you’re wearing a johnnie, pushing a button for help, and feeling like crap you’re surrounded by streams of people in uniforms who know each other and work together every day. A fish out of water. As a patient stakeholder/expert on a panel, I’m surrounded by scientists, physicians, administrators.  A fish out of water.

Interesting idiom, fish out of water. I picture a fish flapping, breathless, on the deck of a boat or in a pail, ready to die. But really that’s way too drastic. It’s more, oh crap, what am I doing here? I don’t belong. I feel so small. I’m an extrovert (or ENFP for you Myers Briggs folk), so I wriggle out of that fish out of water feeling pretty quickly. Ever since my hippie drug days, I learned to bring safety with me whenever I did anything risky. My intro to Participatory Medicine was Take this Book to the Hospital with You by Charles Inlander and Ed Weiner. Create your own pond in the middle of dry dock in the fish out of water idiom. In Nursing School I set up a study group and held them at my classmates’ homes.  I knew how to study and they knew how to cook. As a direct care nurse, I encouraged people to have a family member with them at all times. I build relationships with people on panels and soon I have a pond.

It’s harder when you’re not an extrovert.  It takes pre-thought, planning, and encouragement from others. When I watch introverts manage successfully they know who they are, have confidence, and are clear that it’s their needs that should be met. And they take someone to the hospital with them.

What do you do when you’re a fish out of water?

Post Image from Public Domain Pictures

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Eureka! Triggers and Signals

By | Advocate, Caregiver, Clinician, ePatient | 4 Comments

When Liz found herself unwilling to floss, she knew that major depression was soon to follow. She’s going to need help.  She tells someone who knows how to help her before she loses the will to take any action. When I start to get dizzy, I know my MS symptoms will soon get worse.  Drinking water almost always helps. Water! Sometimes I feel like I’m going to cry. No real reason. Normal life. It’s a signal that I’m overtired. Nap or meditation is next.  It always works. If John feels stressed and bloated, a flare-up of his Crohn’s is soon to follow. He avoids certain food, takes acetaminophen, and stays near a bathroom. When Tiffany gets a rash she needs to see her doctor within a couple of days. If she has joint pain as well, it can’t wait a couple of days.  Tiffany has lupus.

Liz, John, Tiffany, and I recognize signals that trouble is coming and action is needed. We learned the signals because we are wired to take the step back and watch ourselves from a distance. We are mindful and curious about patterns. It takes time until the Eureka/recognition minute hits. None of our doctors ever asked us if we knew our signals or asked us about our patterns.  We are all four fortunate to have a friend or care partner who listens to our ramblings.  It’s during these ramblings, complaining, wondering, pattern-seeking, and problem-solving that we learned first one signal, then more. Two of us have clinicians that helped us figure out what to do once we told them about our signals. The other two tried stuff they learned from our advocacy associations and social media networks. We are so relieved to be building this tool chest of actions to take when we recognize signals. We are eager to discover more patterns and signals. It’s like turning over a rock and finding a twinkling gem.

Once we recognize a pattern, a signal, and an action that works, we can start to look for triggers. Triggers are stressors we know will be likely to cause a signal. Managing triggers is prevention. Liz, John, Tiffany, and I have a common set of triggers: emotional stress, inactivity, smoke inhalation, insufficient rest. We also have unique triggers.  They are many and varied.

Traditional doctor visits seldom contain routine time to learn about and discover signals, triggers, responses, and prevention. The electronic medical records seldom keep track of this learning, action, and response. It makes sense (silly, but makes sense). It’s time-consuming and it’s not in the many medical professionals’ training and workflow.  It’s up to us and our personal health team. I find that people who blog about their illness and their life challenges caused or made worse by their illness, almost always write about signals, triggers, and actions. You can find many on The Chronic Illness Bloggers here on Facebook. Liz, John, Tiffany, and I also keep track as we learn about what worked – Spreadsheets, journals, or blogging.

Not everyone has a pattern-seeking brain. Even if they do have a pattern-seeking brain, they may feel so bad that there’s little space to use it.  So it’s up to our care partner, our friends, our social network, to help us.  It’s liberating. It’s diagnosis agnostic (true for any chronic illness). It’s so totally worth the effort. What have you learned?

Dandelion Trigger Photo by Dawid Zawiła on Unsplash

Pattern Photo by Amador Loureiro on Unsplash

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