March Madness – TrumpCare

I’m not following March Madness this year for the first time since we bought a TV in 1985. We ended cable this year (that’s another health story for later). Rather, I followed the suspense of the failed enactment of RyanCare and TrumpCare. I silently cheered at my seat in DC while reviewing PCORI Palliative Care funding requests.  My elation lasted all of five seconds. I can’t ignore that Ryan, Trump et al still want to end funding for Meals on Wheels, housing subsidies, and home energy supports. We know that even with the best-subsidized insurance, a person who can’t get enough food to eat nor heat their home, nor afford a home can’t benefit from great medical care. These social determinants of health (or living life if you’re not a researcher or policy maker) impact health as much as, if not more than, medical care. Continue reading “March Madness – TrumpCare”

Health Hats – 2016 in Review

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”

Health, Wellness, and Medical Decision Support, Wherever and with Whomever

When diagnosed wcdsith multiple sclerosis, I did little research. Here I was, a card carrying member of the research industrial complex heavily involved with the Patient-Centered Outcomes Research Institute (PCORI). I just couldn’t bring myself to Google MS.  I relied on my wife to do the research and inform me. I told my neurologist I wanted to get worse as slowly as possible and didn’t want to take anything that messed with my pathological optimism. Then I relied on him to make medical decisions for me.  No clinical decision aids. Simultaneously, friends sent me books and links about diet, lifestyle, over-the-counter supplements to help me with my MS. Thanks, I guess. Not that receptive.  Without looking up one study, I tried non-medical professionals – massage, chiropractic, and acupuncture. These I still use almost a decade later. I brought whatever I heard about or tried to my neurologist, and we discussed it. He told me that he knew about drugs and medical therapeutics, but that everything worked for someone. Some things he knew about and some he didn’t. He liked hearing what worked for me. He told me what he had heard from other patients.

When my mom was diagnosed with Pancreatic cancer, she relied on me to do the research. Well, really, she asked me questions, so I had to do the research. In fact, she didn’t make any decisions based on the evidence I uncovered. “I’ve had a good life. No surgery, no chemo, no radiation. I want to stay home.” Continue reading “Health, Wellness, and Medical Decision Support, Wherever and with Whomever”

What Works? Outside the Box

Outside Of The Box

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”

Life literacy – If you can’t explain it to a six year old…

I plstudentsay baritone saxophone in community Latin and blues funk bands.  Our professional musician leader teaches us the language of music theory – this week it’s Minor Dorian and Lydian scales. As an amateur I understand about a third of what he’s talking about. Still better than a quarter understood six months ago. In Washington this week I reviewed funding applications for PCORI (Patient Centered Outcomes Research Institute).  I serve as a patient reviewer. I made a point about the impact that the frailty of a person with congestive heart failure might have on readmission to the hospital. The review leader asked me if I meant xxxxxxxx (something about the methodology of the research study).  I had to say, probably not, since I didn’t understand a word you just said. I understand about 2/3 of the scientific conversation at thesparents-teachers-meeting-vinod-school_b2840c36-5634-11e6-bc43-9f8bec77897ce sessions. I also take part in calls for OpenID HEART Working Group that intends to harmonize and develop a set of privacy and security specifications that enable an individual to control the authorization of access to RESTful health-related data sharing APIs, and to facilitate the development of interoperable implementations of these specifications by others. I still don’t really understand those words. I understand about 25% of the conversation, up from the 5% understanding when I started a year or so ago. Continue reading “Life literacy – If you can’t explain it to a six year old…”

Harmonic Convergence

Consider the fabric of best health. The Quadruple Aim (Best patient and clinician experience, best population health, reduced cost) is that fabric. The weave of that fabric is information about our personal and collective health and health journeys. The warp is learning and continual improvement.


Quadruple Aim: Improving the patient experience of care, improving the health of populations, reducing the per capita cost of health care, and improving the work life of clinicians and staff.


Health information includes the data in our health records (paper or electronic),  patient generated health data (PGHD) (vital signs, activity, experiences, symptoms, history, etc.), census and community data, and perceptions collected from surveys, focus groups, and chatter.  Learning can be formal and structured as in research and analysis, clinician consultation and advice, education and training, and tests of change as in Plan, Do, Study, Act  (PDSA) or informal as in social and traditional media, child rearing, personal experiments (try something, see how it works, try something else), family, neighborhood, and water-cooler conversations. Continue reading “Harmonic Convergence”

Your Communities Need You!

Black Lives Matter! Disability Rights! Women’s Right to Choose! Gimme My DaM Data! Calls to action. In the early 60’s my parents were Fair Housing activists. They were the first whites in Illinois to adopt mixed race children and were the first whites in their all white neighborhood to sell  their house to an African American couple. They successfully invited Martin Luther King to speak in their suburban high school.  In the late 60’s I marched against the Vietnam War, sat in, and became a draft counselor. Now I advocate for people at the center of health care.

What motivates people to advocate for change?  What actions do people take? For my immigrant parents, , the Civil Rights Movement opened their eyes to discrimination in their community. As holocaust survivors they knew discrimination. Some of my heroes in healthcare transformation, such as @CristinLind, @ePatientDave, @ReginaHolliday, Mary Anne Sterling, and @JackWhelan experience the craziness of healthcare. They take political, community, and personal action.

Continue reading “Your Communities Need You!”

What’s Pokeman Got to Do With It?

I went to a meeting in Chinatown attended by parents with children on the autism spectrum going to Boston Public Schools. The attendees spoke Mandarin, Cantonese, Vietnamese, English and Bureaucrat-ese. The parents helped each other advocate for services for their kids. Most only spoke one of those languages. After 2-3 minutes of speaking in one language someone would raise their hand and there was cross translation by the 2 or 3 people who spoke more than one language.  This repeated for about an hour.  I went home and my 7 year old grandson tried to teach me to play Pokémon.  I understood less than I did in Chinatown.  Opa, you don’t understand this at all!! Continue reading “What’s Pokeman Got to Do With It?”

The jumble of research

Next week, I’ll be attending PCORI’s (Patient Centered Outcomes Research Institute) Communication and Dissemination Advisory Team meeting in DC. Research is ink on paper until people at the center and clinicians receive the results in an understandable and useable form: communication, translation, dissemination. I speak with many of you  about what matters to you. I hear you ask:
  • How does research apply to me? For example, a study reports that one treatment is likely to result in improvement 40% of the time. This treatment  results in 10% fewer people dying within 5 years than that treatment. 20% of people taking drug A are likely to have some nasty side effect.  If research is about groups of people (populations), how do I know whether to take one path or another, based on research?
  • Health care seems to be a Tower of Babel – communication is tough in the best of circumstances. How can we best communicate complex information from clinicians to people at center, from people at center to clinicians, or between specialists?
  • How do my personal values, religion, or culture affect research results?
  • The person I care for has changing ability to understand (getting older, more confused, etc.). How do I best share research results?
  • What about research that isn’t published, doesn’t prove the hypothesis? It all seems so uncertain.  How is that communicated.
  • What about word of mouth, popular media, or social media?  How do I know what to believe?
  • If I am one of the people who is a subject in research, how do I protect my privacy?
I’m hoping that we begin to assemble a framework for understanding communication and dissemination of research. Right now it seems like such a jumble.

Talking about Uncertainty

How do we people at the center of care speak about uncertainty in health among ourselves? How does uncertainty even come up in thought or conversation? I feel [fill in the blank]. Sometimes we feel poorly and speak to no one – the conversation is in our heads. Sometimes we feel poorly and seek advice about how to feel better from people in our network including healthcare professionals and non-professionals. Naturally, the person in distress and each of the people in that network have different information, knowledge, tradition, experience, and expertise about the distress and how to make it better. These difference occur within the groups of people: doctors can disagree, loved ones can disagree. Sometimes better means different things to different people. For example, when I have pain, better could mean
  1. I want the pain to go away completely, now,
  2. I can live with a level of pain that allows me to complete my activities of daily living (bathing, cooking, transportation, etc.),
  3. I want to go to my daughter’s graduation in spite of the pain,
  4. I want to feel less anxious about my pain,
  5. I can live with pain that doesn’t interfere with my ability to think or write,
  6. I just need to get some rest.
The are times we act alone. Other times we may not know what to do and we talk about it with someone at the center (that person could be on our health team or not). Or someone may see that we’re in distress and tries to help us figure out what to do.
We could be certain (sure) that a particular action will work – pill, treatment, food, activity. And it may or may not work. I’m sure that these pills or treatment will make my pain go away. The pills or treatment may or may not make the pain go away – for an hour, a day, or forever.
Geeze, this certainty / uncertainty thing can get complicated. We haven’t even talked about when we feel fine and someone suggests we change our habits – stop smoking, lose weight, be less grumpy. I will continue this exploration of uncertainty in weeks to come.