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Best health Archives - Danny van Leeuwen Health Hats

A Vision of Paying for Value

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

I’m the child, Custodian and Healthcare Proxy of my 89-year-old mother, Alice. I live in a different state. My mother has diabetes and is depressed. Her care team, beside herself and me, includes medical providers in various health settings, community support agencies, and a full-time caregiver that helps her schedule and get to health-related services. My problem is to understand what my mother wants for herself and to track who says they’re doing something for her (including my mother and me), what they’re doing, and when they’re doing it. I want to know what it takes to do it (Can she afford it? Can she get there? Does it agree with her? Who will be with her? etc.). I want to know if the actions have the effects we thought they would. I want to know what her risks are and how we plan to prevent or respond to them. I want to able to keep track of all this and keep it current. I want to share it or have it shared from day-to-day and from setting to setting even if I’m not present.

This scenario describes a vision of healthcare for a caregiver and his mother. The vision lives in a context of social circumstances, physical environment, individual behavior, genetics, and medical care – the determinants of health. In the best of circumstances, healthcare dollars pay for this vision of best health for people, their families, and communities.

The goals of any payment method should be to reward high-quality care and to permit the development of more effective ways of delivering care to improve the value obtained for the resources expended. These goals are relevant regardless of whether care is delivered in a predominantly competitive or regulated environment, and whether the ultimate purchaser is an employer or the patient/ consumer. Payment policies should not create barriers to improving the quality of care. Institute of Medicine (US) Committee on Quality of Health Care in America. Crossing the Quality Chasm: A New Health System for the 21st Century. Washington (DC): National Academies Press (US); 2001. 8, Aligning Payment Policies with Quality Improvement. Available from: https://www.ncbi.nlm.nih.gov/books/NBK222279/

This means that payment systems for treatment and services recognize quality (best health), support improvement and reward stakeholders (patients, caregivers, clinicians, institutions, and insurers) for the process and outcomes of best health. Read More

Blessings. Giving Thanks.

By | Family man | One Comment

Grateful for our blessed life together. Grateful for our home with the footstep rhythm of family upstairs. Grateful that our means are enough to live within. Grateful for the ability to do good work. With so much suffering in the world, grateful for those working to make our lives and others’ lives better.  We share 7% of our gross income each year. We give to Planned Parenthood, Amnesty USA, WBUR, WNYC, WGBH, Radiotopia (check out Ear Hustle), the National Partnership for Women and Families, Arlington Food Pantry, The Greater Boston Food Bankthe Free Wheelchair Mission, the Housing Corporation of Arlington, Partners in Health, Doctors Without Borders, the Museum of Fine Arts, Project Sleep, the Pann Mass Challenge, Wikimedia Foundation, Regina Holiday’s Cinderblocks and the Walking Gallery, Mothers Out Front, the Hispanic Federation, the Arlington Library Foundation, the Harlem Jazz Museum, and several others. We thank them for their inspired and inspiring work. We are one.

From the Inside Looking Out

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

At the #PCORI2017 Annual Meeting, Alan Alda showed us a simple mirror improv exercise (remember Groucho and Chico Marx in Duck Soup?). Alan first showed us him mirroring an audience member, then the audience member mirroring him, and finally, them mirroring each other at the same time. It was an exercise in empathy.  Afterwards, someone at my table said,

From the outside looking in, it’s hard to understand. From the inside looking out, it’s hard to explain.

I first heard these words many years ago from a peer support professional describing the experience of depression and addiction. I understand this better now that I’m a person with a chronic illness. I work hard to explain what’s inside to my family and other members of my health team.  Often I don’t know or I don’t have words. Mindful meditation helps tremendously – deciding to become friends with what ails me. It’s all me and I love me. I’m not sure if it helps me explain, but it helps me know myself. And for sure, it increases my empathy when I’m on the outside looking in. Thanks, Alan, for reminding us.

See also other posts about Improv and

Patient-Centered Outcomes Research Institute

Learning from What Doesn’t Work

CMS Quality Measures for People

By | Advocate, Caregiver, Clinician, ePatient, Informaticist, Leader, Researcher | 6 Comments

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:

  1. Measures serve to evaluate the performance of individual practitioners (not measure whether patients attain optimal health or how the team is functioning),
  2. 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),
  3. 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),
  4. 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?),
  5. People at the center of care, insurers, and policymakers all feel ill at ease with uncertainty,
  6. 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),
  7. 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),
  8. 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

Help Making Choices

By | Caregiver, Clinician, ePatient | No Comments

Let’s continue the conversation about making choices along our health journey. I call this choice-making informed decision-making. Some call it shared decision-making, others call it clinical decision-making. Common to all three labels is that decisions are made based upon evidence (research) when evidence is available. Remember that evidence says that under specific circumstances for certain groups of people (populations or communities) choice A is more likely than choice B to lead to a desired goal or outcome. For me (an individual) sometimes it doesn’t. And, in spite of $billions spent on research, most health decisions lack a supporting body of evidence – just too many decisions out there. As a patient and caregiver, I know that most of my health-related decisions aren’t clinical. They involve my behavior and my team’s behavior, the environment, my genetics, my social circumstances, the community I live in, and, of course, luck. Read More

I am Not My Condition

By | ePatient | One Comment

I’m Disabled. Who labels themselves? Feels like crap. I applied for disability. Needed a psychological evaluation. Spent an hour with a psychologist. I spent that hour telling her about the effect MS has had on my life. MS is seriously annoying…. Came out feeling terrible.  “Oh man, I’m disabled. My life has been so disrupted. I can’t do what I once did. Woe is me.” Lost my pathological optimism for a day. I’ve had to train myself over the years to feel sorry for myself. “OK 5 min, feel sorry.” Enough of that. It’s too boring. When I feel sorry for myself my symptoms are worse. Direct correlation.

Lots of people have it worse than me, much worse.   Read More

The Personal Health Journey

By | Advocate, Caregiver, ePatient | No Comments

The metaphor, Personal Health Journey, works for me. We’re heading somewhere for health whether on purpose or not. We’re never actually there. It’s continual – until it isn’t. Sometimes we have a map, sometimes we don’t. Map or not, we’re still heading somewhere:  work, the grocery store, our in-laws, the beach. There’s always decisions to make on a journey: stop for gas, rest, sight see, go left, go right? Same with the health journey.

The journey is different if we’re well, acutely ill, chronically ill or dying. Our aspirations are different.  When we’re well we either don’t think about our health or we want to stay well. When we’re acutely ill (now we’re a patient), we want to get over it. When we’re chronically ill we want to live the best life possible. When we’re dying we want to live as long as possible or live as best as possible OR both. The journey is different, too. For the well it’s Inertia or Select Personal Health Goals-> Act and Track->Deal with symptoms when they arise. For the acutely ill it’s Symptom->Diagnosis->Treatment->Recovery->Back to Well or on to Chronically Ill (thanks to John Mitchell at Applied Marketing Science).  For the chronically ill it’s Disbelief->Grief->Get help (care and treatment)->Recalibrate->Maintain->Give back->Relapse (and back again). Read More

Personal Health Goals Revisited

By | Caregiver, Consumer, ePatient | One Comment

I’m celebrating that I’ve finally learned an effective stretch for my hamstrings. Thigh and calf Charley horses and foot cramps have disrupted my days. My low back’s been hurting for several months caused by this tightening and cramping of my quads, hamstrings, calves, and feet. It’s become hard to sit for more than 15 minutes. I bought a standing desk, next to my sitting desk. I’m paying attention to ergonomics, learning to type (I’ve always been a hunt and peck kind of guy). My chiropractor and massage therapist attribute these muscle cramps to changes in my walking caused by the MS and wearing an ankle/foot orthotic. The Charley horses are the worst. I’m learning that there’s nothing straightforward about stretching. I’ve been stretching for months with very short-term relief. All of a sudden on a road trip this week, stopping at every rest stop to stretch, it kicked in! It’s not about stretching, it’s about relaxing. Standing tall, pelvic tilt, bending at the waist, relaxing. A meditation. I can feel the hamstrings and calves responding. Exciting!  Read More

Queen for a Day

By | Caregiver, ePatient, Informaticist | No Comments

If I was queen for a day, with a genie, and a clean slate…

 

The practice management staff of XYZ clinic routinely runs a program of all their patients’ data to predict those at risk for needing urgent care or hospitalization. The practice contacts Alice (one of many such patients or caregivers) pointing them to their practice portal or speaks with her on the phone with the module open to them. A module in the portal or caller from the practice asks Alice to confirm the accuracy of the data and allows or asks her to correct or fill in information used in the screening program. Alice can type or speak her responses. The module or caller asks questions about the current status of her treatment plan (activity, diet, meds, appointments, etc.), her current abilities and symptoms, and asks her if she has questions. Depending on the answers, Alice may be instructed to go to an Emergency Room. If she needs Urgent Care, another module opens up to a clinician immediately available by video who has access to the same data as Alice and her answers to the clarifying questions. They discuss her status, make decisions, order tests and meds as needed and update her treatment plan. If she needs neither emergent or urgent care, her next appointment at the clinic is confirmed or scheduled and Alice is reminded of her treatment plan and schedule and pointed to activities and community resources that may be of value in the meantime. When Alice arrives at the clinic, her clinician views the entries in the portal module with her and they discuss her status, make decisions, and update her treatment plan. For any of the scenarios, Alice’s questions are answered live or via the portal. Costs and out-of-pocket expenses are included. Read More

Cinderblocks4 – Medical Advocacy at its Best

By | Advocate, Caregiver, ePatient, Informaticist, Leader, Musician, Researcher | No Comments

 

Pound for pound, the best health conference! A rare combination of small, local, action-oriented, inspiring networking, and relaxing. 40-50 attendees met in Grantsville, Garrett County, MD, population 766, for three days. Regina Holliday of Walking Gallery fame organizes and breathes life into Cinderblocks. The older I get, the more I seek people who collaborate to solve local problems that matter to them.   50% of the 30 presentations were literally local – from Garrett County and immediate vicinity. The rest came from as far as France and LA, Oklahoma, Texas, Boston, and DC to learn what works for each other. A sample: Read More