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health partners Archives - Danny van Leeuwen Health Hats

CEO of My Health Team

By | Advocate, Caregiver, Clinician, ePatient, Family man, Leader, Researcher | One Comment

I am the CEO (Chief Executive Officer, the boss) of my health team with a ton of subcontractors: my primary care doc and her practice, my neurologist and his practice, the radiology department at my local hospital, the neighborhood pharmacy, the utility companies… You get the idea. They get paid through my employment benefits, your and my taxes, and out of my pocket. Right now I directly employ my massage therapist and acupuncturist – fee-for-service. I also have pro bono team members: my wife (my care partner), my family, friends, and advisors.

As CEO of my health team, I try to lead and manage. Leading is building and fostering relationships, finding service providers as needed, setting health goals, coming up with a plan to meet my goals, and learning from our mistakes (what doesn’t work).  As a leader I find ways to share information among the team, and, of course, I fundraise and cheerlead. Leading is also about succession planning.  Who will lead when I can’t? Managing, on the other hand, is negotiating service agreements (contracts), actually seeing that the tasks in the plan happen as desired, maintaining the team and it’s connections, and trying to fix what isn’t working. It’s a tough system to lead and manage. It’s exhausting. I have some of the skills I need, but nowhere near all. There’s very little training for Health Team CEOs- no certificate or degree. The pay stinks. There’s no vacation. I can’t resign. Read More

caregivers hands

Caregivers Rule: National Caregiving Conference

By | Advocate, Caregiver, Clinician, Consumer, Family man | One Comment

I just got home from the 2nd Annual National Caregiving Conference in Chicago convened and hosted by Denise Brown and  NationalCaregiving.com. You know the drill – most health care anywhere in the world is provided by family caregivers and parents. The attendees, mostly active or recent caregivers, networked over their shared lived experience. Presentations about caring for elders with dementia was the most common thread and topic.  Occasionally I heard chatter about caring for children or depression. Sometimes the stories of frustration, exhaustion, and loneliness overwhelmed those of gratitude, survival, and inspiration. It’s hard for me to hear too many of the painful stories and maintain my pathological optimism.

I especially appreciated the session about surviving and blossoming as a couple while caregiving led by Frank and Lisa Riggi – heartfelt, practical, and humorous. 10 Activities to do With Your Spouse Every Year – 10!, Only 10? I ask many caregivers, “How goes your marriage/partnership?” Faces fall.  Cathy Sikorski‘s keynote, Preparation, Frustration, and Surrender…Boldness Throughout Caregiving was an intriguing combination of hands-on, funny, and legal. Imagine you’re talking to the Cable Company. Be Bold!

Did you know that a third of caregivers die before their caree? Crazy?  Not really. Caregiving wears you down, while caregivers put their caree before themselves. Self-care: I loves that theme. This crowd seemed to self-care better than many.

The entrepreneurial spirit shone. My favorites: Carla Macklin’s Adaptive Clothing; Mekhala Raghavan and Angie Creager’s bathing aids and fall prevention (Waiting for production of their vibrating neuro-responsive fall prevention mat and their wash and vacuum the water shower anywhere system. I’ll try anything for fall prevention for myself and narrow doorway bathrooms are endemic in older homes); Quikiks Hands-Free Shoes (I’m always looking for easy, safe, comfortable shoes); and Shirley Riga’s book, “Tools for the Exceptional Parent of a Chronically Ill Child” published by Strong Voices Publishing.  Check them out! I love to hear what works for people. Solutions from the trenches rule! (I receive no compensation from anyone mentioned here.)

I attended as a panelist for The Family Connection: Supporting Essential Care Partners as Patients Transition to Home, with Geri Lynn Baumblatt, Mary Anne Sterling, and Cathy Crookston. Most nightmares I heard at the conference involved transitions to or from medical care. I did hear one story of the transition done very, very well. It can be done. If you’re lucky it’s because one person made a difference.  It shouldn’t be luck. Caregiving is hard enough.

Caregivers: How do you manage your marriage? When has BOLD worked for you? What’s the best transition you’ve experienced?

Honor the caregivers. Help the helpers.

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

Health Goals to Clinical Decisions (CDS)

By | Caregiver, Clinician, ePatient, Researcher | 2 Comments

It’s hard to reach personal health goals or solve medical problems without a plan.  Plans require decisions. Never-ending decisions (choices) in the health journey. Clinicians, researchers, and insurance companies study and use Clinical Decision Support (CDS) to help with the decision-making process. It’s a shortcut for using research (evidence) in the decision-making. Some talk about patient-centered decision support (see a definition at the bottom of this post). They’re trying to figure out how to help people to make decisions in two minutes of ten-minute visits. Yet, few patients or caregivers I’ve met ever talk about CDS.  So how can people understand the value and limitations of CDS? Read More

Learning What Works

Learning What Works

By | Caregiver, ePatient, Researcher | One Comment

One of my passions in life is Learning What Works for people on their health journey. As we travel, we make choices – endless choices.  Should I do A rather than B? Eat the brownie or don’t eat the brownie? Take a walk or don’t? Go to the doctor or wait until I feel worse? Fill the prescription the doctor wrote or don’t? Have surgery or wait and see? Stay home with my dad with dementia or arrange for home care? Or we make no decision at all (a decision in itself). Sometimes people search for help in making these choices. Help from professionals on their care team, from their care partner, from Dr. Google, from their mates or social network.

Learning what works is an experiment.

A person tries something – it worked or it didn’t – for them. To know it worked means that the person has an idea of what they are trying to accomplish (See my post on personal health goals). And that they think there’s a relationship between what they tried and what they accomplished (or didn’t). I have a fever, took an aspirin, and the fever dropped. I have heartburn, stopped eating chocolate, and now less heartburn. My MS symptoms are getting worse. I reduce manageable stress. My symptoms subside. What’s important in all this is that I know what I want, I try something, and I feel better or accomplish what I wanted (or didn’t). Some people, like me, have a written care plan and keep track with lists and spreadsheets. (See my post on planning personal care)  Most don’t. Read More

Checklist

Plan of Care – So Many Questions

By | Caregiver, Clinician, ePatient | No Comments

I am on a health journey, trying to meet my health goals with the support of a care team. Who’s doing what? When are they doing it? That’s my plan of care for me.

Most people don’t normally think in terms of a plan of care for themselves. Let’s peek into their minds:

Plan of Care – What’s Going on in Their Minds?

Patient: What’s wrong with me? Should I tell the doctor? What does she want me to do?  Can I afford it? Does it (will it) hurt? Can I (will I) still be able to take care of my family (go to work, go out, have fun)? What happens next? How’m I doing now? Did the med (the procedure, the diet…) work? Did it help me? What should I worry about? What should I do if it happens (again)?

Clinician: What’s on his mind? What’s wrong with him? What should I do next?  What did I prescribe before? Did he do it, did he take it? Will he tell me the truth? If he did it, did it work? What do the tests tell me? What should I prescribe next?  What are other doctors doing (ordering)? Has he been to the hospital since I saw him last?

Questions, questions, questions. So many bumps in the road and detours in the health journey. Few maps, spotty GPS at best. Read More

Health team teamwork

Health Team Relationships

By | Caregiver, Clinician, ePatient | No Comments

My primary care doc’s medical technician came in to take my vital signs, “I’m Frank. I’m new to Dr. Z’s team.” “Hi, I’m Danny,” I replied. “Dr. Z’s on my health team. Welcome to the team.” Big smile from Frank, “Hmm, I never heard that one before.”

My PCP and neurologist get a kick out of me and my engagement in my health. I get the feeling I’m unusual, but I’ve never asked. We have a relationship and a communication style that works for us. But what if it doesn’t? 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

Need a recharge? Listen for what works.

By | Advocate, Caregiver, ePatient, Family man | 2 Comments

 

I feel awash with stories (nightmares even) of disastrous, frustrating relationships between people and their professional care teams. I listen with amazement and watch the hurt, the anger, the self-blame, bubble out, spew forth. Sometimes I have to sit sideways to protect my heart from breaking. At their best, relationships are partnerships. Partnerships can be a bitch in the best of circumstances. Yet, good partnerships make me high – the partnerships with my honey, my work teams, in music groups, with the anonymous one-time chance encounter and yes, with my health teams. Read More

Personal Health Goals

By | Advocate, Caregiver, Clinician, Consumer, ePatient, Family man, Uncategorized | 2 Comments

 

As a person with MS, I’ve written that my personal health goals are to progress as slowly as possible and do nothing that will mess with my pathological optimism. People I talk with about personal health goals say it’s not easy to come up with personal goals.  What do I mean? OK, people who are well want to stay well.  Those who are acutely ill (cold, broken leg, stomach ache, etc.) want to get over it. Those who have chronic conditions want to manage as best as possible. Here’s a stab at a list of personal health goals. Read More