I’m the son, 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, besides 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. Continue reading “Precision Prism”
The pervasive drumbeat of Calls for Action in healthcare overwhelms me, excite me, bewilder me. I’m wired for action. I have to listen and consider or shut it out. I have no middle ground. There’s a limited amount of gas in my tank. I feel protective of my retirement dollars. And I still need to take out the garbage and do the laundry. Do I want to respond? Am I able to respond? What am I really responding to? How much is enough? Does it align with my mission? Will it be fun? Continue reading “Resist, Fund Me, Change, Join, Decide, Click, Lead”
Have you ever remodeled your kitchen? So many decisions: Cabinet style, drawers, finish, hardware, not to mention the floor and appliances. There’s you, your partner, a contractor, a cabinet person, a floor person, the appliance merchant. Decision after decision – should we or shouldn’t we? And nobody’s gonna die or get injured – hopefully. All while trying to keep living, cooking, dishes, lunches. My wife and I were so stressed. Kitchen decisions pale next to health decisions, especially medical decisions. It’s not like, “do I prefer this drawer pull to that drawer pull?” “Would I rather have wood or tile floors?” There is so much more uncertainty in health care.
Why me, why now? Who says? How sure are they? What if I do? What if I don’t? Will I still be able to ….? Who pays? What will they think? How do I get there? What aren’t they telling me? Are they listening to me when I say I can’t or I won’t? I just can’t think right now! Oh, this sure sucks! Continue reading “Should I or Shouldn’t I? Managing Uncertainty”
I’ve been feeling my oats in 2016 as an advocate and catalyst for Empowering people as they travel together toward best health. As my dear friend, Mary Sue said, Danny, you’ve found your calling! Wearing my many hats, I often feel like I know enough to be dangerous about much of healthcare. When I walk into a room of experts in their fields – clinicians, researchers, policy makers, techies, insurers, executives, I think, What am I doing here? I’m way over my head. It takes two minutes to understand that I’m the connector of their considerable expertise to the workflow and life flow of patients, clinicians, caregivers, and staff. I’m also the translator among their jargons. I can shift the conversation by offering a voice for some experiences of patients, caregivers, and clinicians.
I’ve refined my work this year as a connector, translator, and advisor while working as a technical expert in patient-centered research, behavioral health information technology, community health, and health payment innovation. I’ve benefited from the warm embrace of Wellesley Partners during this transition year after leaving my 40+ years as an employee and boss. I am grateful that they believed in me and helped me polish a few rough edges of inexperience. I also appreciate the counsel of many – Doug, Geri, Pat(s), Juhan, Bevin, Eve, Jarred, Keren, Jonathan, Sarah, and Lauren to name a few. You all know who you are. Thanks. I’m grateful for the many inspiring people in the patient/caregiver/clinician experience space. Thanks for all you do. You keep my embers glowing. Continue reading “Health Hats – 2016 in Review”
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. Continue reading “Decisions, Decisions, Decisions”
I’m committed to and invested in evidence-based health and wellness. I get my flu shots, exercise every day, and take my cholesterol meds. I check out studies so I’m informed when I make decisions with my neurologist. I am committed to patient-centered research. This week I was intrigued by a conversation in Washington @PCORI (Patient Center Outcomes Research Institute) about the challenge of following up with people using medications in off-label ways (no formal evidence, many experiments of one). The thing about evidence is how does evidence happen when there is patient and/or clinician creativity? People try something, it helps. They share on @PatientsLikeMe,@mypatientsMatch or social media. Someone else tries it. It helps some and not others. How does that experience turn into evidence? A challenge is that such data is either not collected or so spread out that it can’t become evidence. Plus, it’s tough to collect data about how stuff works. How can studies be done about people after they feel better? Continue reading “What Works? Outside the Box”
225 weekly blog posts. How do I do it?, a reader recently asked me. The health journey provides me endless material: fascination, intrigue, tragedy, empathy, frustration, wonder, curiosity, fear, and inspiration. As a nurse I’m blessed to participate in some of people’s most intimate moments as a guide, helper, ear, hand holder, and translator. As a team member and leader I study the puzzle of how people think, emote, decide, and relate trying to get anything done safely and ethically in the most consuming, illogical, nonsensical, complex system imaginable. My palette includes the desire and dilemma of habit change, the tangled web of cultures, the enticing potential and hype of technology, the flood and inaccessibility of data, the vital impossibility of policy change, and the insane contradiction of money surrounding, driving, tempting, confounding health. Can I tease out the simple and illusive filaments of the magic levers of best health? What works, how do we know? How do we find, share, and use evidence? How is uncertainty communicated, how does information about groups of people relate to me, a single person? I love sharing my broad and thin knowledge of health as a coach and a writer. As a person on my own health journey, writing this blog stokes my fire – feeding and renewing my pathological optimism. Actually, I start with a nut of an idea, sit down with that idea on Sunday and write. Takes about an hour. I used to read the drafts to my mom, now my wife. It never turns out the way I think it will. The post writes itself. I’m an old hippie – at the end of the day the health journey is a roller coaster of love. Thanks for the ride. See you next week.
This week my son, Mike Funk, would have been 40. Lord, I miss you, Mike. You still inspire me. You’d be proud of your seasoning family.
Last time I saw my Primary Care Provider I asked if I needed to keep taking my Crestor, a drug to reduce cholesterol. She pulled out the clinical practice guideline for the treatment of blood cholesterol released by the American College of Cardiology and the American Heart Association. Every couple of years I ask her the same question. Do I really need this? Does it have long-term side effects I should worry about? I’m 63 years old, when can I stop because I’m too old? With insurance it costs me $300 a year out-of-pocket.
How many clinical practice guidelines are there? I could find no specific count – thousands I’m sure. The Agency for Healthcare Research and Quality (AHRQ)’s National Guideline Clearinghouse lists 1975 guidelines.
Who writes guidelines? What is the evidence to support guidelines? Which guidelines apply to me? How often do guideline writers rewrite them when new evidence comes to light? How long does it take for people at the center to become aware of guidelines and use them? Continue reading “Clinical Practice Guidelines – Oh My Aching Brain”
This week people told me stories about a moment in their health journey – Symptoms, people, relationships, procedures, thresholds, feelings. Completely fascinating, inspiring, and gut wrenching windows into life’s challenges and tragedies. I heard, I’m worried, the surgery worked, I can’t find a clinician who listens to me, my condition recurred – worse, my family’s supportive and grieving, how will I manage my job, I fell, my mother went into assisted living (all from different people). Other people told me about work they’re doing – research, businesses, experiments. I heard, let me tell you about the study I’ve been doing about multiple sclerosis, I’ve learned a lot about the stages that a person goes through as they gather information about chronic illness, I’m helping people succeed in their startup, I’ve found 5 people who have had the same success managing their chronic fatigue. I read studies this week about reducing opioid use, predicting resource use in chronic illness, and improving the ability of individuals and clinicians to communicate and set mutual health goals.
Actually, this is a normal week. Experiences, experiments, reflection, action. All tie together. Each necessary, none sufficient.
Notice how young kids learn to walk. Try, fail, try again, over and over until they get it right. On the other end of the continuum are politicians accusing each other of changing their minds. Dragging up statements from years ago to slap each other with a change in direction. When did they lose their ability to be proud of learning? When did voters start expecting politicians not to learn, recognize failure, and try something else? I don’t understand this. I once said I would never get married, I would never have kids. Now I’ve been married for 40 years and have a fabulous family. I learned much since my ignorant adolescent days. Living successfully with chronic illness requires trying, failing, getting up again and trying something else. Diagnosis depends on testing, trying a treatment, measuring its success or failure, and repeating the cycle until something works to decrease suffering. The tragedies are when trying never leads to a better life, or the team stops trying. Research faces a similar dilemma. Supposedly research tests hypotheses. One treatment or approach works better than another. Yet peer-reviewed journals publish articles that prove the hypothesis and doesn’t publish articles that disproves the hypothesis. What is this bias? I know that I have learned more from my mistakes than my successes. What if I couldn’t recognize a mistake or a failure and kept sticking with it? Thank God I can shift and try something else. I’m more skeptical when th change is degeneration of values. Less empathy, more fear, less generosity, more cruelty. I could appreciate more empathy, less fear, more generosity, less cruelty. Let’s honor rapid discovery of and learning from mistakes and courage to try something else. Let’s learn from those kids.