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
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
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
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 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
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
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
Decisions, decisions, decisions. We face endless numbers of decisions during our health journeys. From the mundane, should I fast to lose weight? To the tedious, what statin should I take? To the heartbreak, should we do everything possible? Yesterday, after playing music, someone told us that he fasted to lose 20 pounds. How many weight loss discussions have we had in an endless number of settings. I can remember one time discussing it with my Primary Care doctor – no decision, no choice of action – just an observation that my weight had been steadily increasing over the years. My cholesterol is high, and my Dad died young of a heart attack (not from high cholesterol). I’ve taken six different statins. My Primary Care doc thinks the evidence is strong for me to take statins. We regularly change brand based on effects on my liver enzymes, cost, and insurance coverage. A friend’s elder mother had major heart surgery. The cardiac surgeon reported success, she’s doing great – the blockage was successfully removed. She’s still in a coma, intubated. She’s never had end-of-life conversations, no advanced directives. Her husband will want to do everything possible. No decisions lead to a decision. Read More
I’m thankful that I was born a white straight male to a closeted gay dad, Ruben, and a Holocaust survivor, Ruth – I appreciate that I have first world problems and learned from them that I must act to better the world.
I’m thankful that my best friend is my life partner and care partner – I strive to be equal to her love.
I’m thankful for my extended family, characters all.
I’m thankful for a 40+ year career as a nurse – privileged to serving during people’s most vulnerable moments.
I’m thankful that I was invited to join my grandmother, mother, and son during their end-of-life journeys.
I’m thankful that my grown sons love the strong women they married, revel in fatherhood, and contribute to community well-being – they keep me honest.
I’m thankful for my grandsons – OMG, what can I say?! Read More
So just a quick post:
Last week I was invited to the @MITRE Corporation by @HarrySleeper and met teams working on:
- Standard Health Record, an open source single health record, if it happens to the person, it’s in the SHR. Secure, informed-consent access to our health data across multiple platforms with advanced security and privacy protocols. Accessibility for us and authorized family , care partners, and healthcare providers to our health-record 24/7, anywhere in the world. Empower people with an enduring voice by allowing us to add, verify, and easily share our data with trusted third parties
- Intervention Engine, assigns risk rating and prioritizes patients for clinician team members in clinics and offices to huddle and review patient status and proposed interventions
- SyntheticMass, a test database of Massachusetts residents health records simulate population health. Expecting to have all 7 million loaded in 2021
- Bonnie, a tool for pretesting clinical quality measures
- Social Determinants of Health, a great graphic for a holistic picture of health
Thanks to @JuhanSonin for the intro. Amazing work going on. Need to spread the word. Till next week.