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”

Person-Centered #CarePlanning – What Data?

More about person-centered #CarePlanning. (If you missed my first post go here)

Our health teams struggle to communicate at transitions (between team members, when adding a new team member, between people, offices, and settings) – it’s a perfect tower of Babel.

In its simplest form communication is who, what and how.  Who needs to communicate? What do they need to communicate? How will they communicate?

#CarePlanning focuses on the whatWhat are the goals of the person on the health journey? Who’s going to do stuff to get there? When? How will these goals and activities be tracked and shared across time and settings?

Let’s engage to better understand #CarePlanning from the point-of-view of the person (mostly as patient, sometimes not; usually including family and/or caregiver), rather than from the point-of-view of the doctor, the hospital, or the insurer. What does the person want to accomplish, who on their team (including the person) is going to do what? by when?  Let’s also narrow our focus to #CarePlanning that can be to communicated during transitions between settings rather than within settings (For example,  between home and clinician office, between hospital and rehab center, between home and work or school. Not within the home, hospital, clinic, or agency). Next, let’s look at #CarePlanning during illness rather than wellness or prevention. Edward Suchman (1965) devised an approach for studying illness behavior with five key stages of illness experience: (1) symptom experience; (2) assumption of the sick role; (3) medical care/healthcare contact; (4) dependent patient role; and (5) recovery and rehabilitation. (my italics added).  Finally, let’s be sure to include the social determinants of health or as us non-academics call it, life. Continue reading “Person-Centered #CarePlanning – What Data?”

Standard Health Record

win_20161030_08_52_02_proI’m on vacation this week. A Blues Cruise. Heard two bands with bari saxes already – Los Lobos and Selwin Birchwood. Today, I’ll try to join the Pro-Amateur JAM.

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.

Community/Technology Partnerships @ Health 2.0

ribboncutting-icI’m a technology nerd and early adopter while also a profound technology skeptic.  My heart sings when communities of people solve problems that matter to them and theirs and then look for technology partners to automate and share their solutions. By community, I mean partnerships of people at the center of care (people, care partners, clinicians) and neighborhoods, counties and states.

Recently, I spent a few days with big data, technology, entrepreneurs, and healthcare under the big top of  Health 2.0 in Palo Alto. CA – a relatively low-key festival of mostly entrepreneurs trying to sell big data and apps with the edge of worry about engaging patients in their data and products. I felt at home with my advocacy and community browsing new ideas and new uses for technology Continue reading “Community/Technology Partnerships @ Health 2.0”

What Happens Next? Planning Care

People: 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 take care of my family (go to work, go out, have fun)? What happens next? How’m I doing now? Did it work? Did it help? 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?  Did it work? What do the tests tell me? What should he do next? Did he do it? Will he let me know? What is anyone else doing about it?

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

Essentially, the medical part of the health journey is 1. Finding out what’s going on (diagnose). 2. Plan care (What needs to happen, by whom, when? What do we expect to happen (outcome)? What could go wrong, how can we prevent it, and how will we deal with it if it happens?. 3. See if the plan worked. 4. If it didn’t, adjust, try something else.

We are each an experiment of one.

These days I’m fascinated by the planning care part. Neither the patient nor the clinician can plan care alone. They need each other and much support – family members, other professionals, technology, and most of all – communication.

Eventually, everyone plans care – usually over and over. Our health system doesn’t seem geared toward planning care. Ten minute infrequent visits between patient and clinician. Routines and technology that can’t handle the dynamic, constantly changing information flow of planning care. The information certainly isn’t easily available to everyone on the team when they need it. Few, if any, rules (standards) exist for patients putting information in.

People: When you speak with a clinician, agree upon a plan of care. Set up a way to ask questions as they come up and report on status, be it portal, email, phone, or keeping a journal.

Clinicians: Use the words plan of care. Write the plan down. Let your patients know how to communicate status and ask questions as they come up before the next visit.

Everyone: Expect your electronic health records to be able to record and track care planning.

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!”

A Roller Coaster of Love

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.

Clinical Practice Guidelines – Oh My Aching Brain

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”

How many words for pain?

There are 46 words for snow in Iceland. How many are there for physical pain in English? Googling synonyms: Suffering, aching, torture, throbbing, discomfort, ache, sore, throb, sting, twinge, shooting, irritation, tenderness… I recall sitting with my mom when she was dying of pancreatic cancer, trying to understand what her pain felt like. Ma, is it sharp, dull, aching, constant, ebbing and flowing?  The more descriptors I tried to come up with, the more frustrated she became with me.  No words worked for her. Yet she tried to describe it to the hospice nurse or doctor without success.  Granted, my mom was home bound and bedridden. She was past the place where function didn’t mattered. How does your pain affect your ability to socialize and work? The way I manage my annoying neurological pains is to get to know them intimately. Meditate on the pain. Sensation, location, travel, duration, what makes it better or worse…. It takes the edge off, helps me be less freaked out and I can manage with less medication. I find my professional team intrigued by my desire to describe it in such great detail. I’m a bit of a freak. Turns out that acupuncture and mindfulness help me enough with my short bursts of radiating neurological zapping down my limbs that I don’t need medication and my function isn’t disturbed.  I recommend that you read Rosalind Joffe’s blog this week, Can You Talk About Your Chronic Pain? Continue reading “How many words for pain?”

Not collected? Not studied.

What do people consider to be clinical data, when they’re not wearing the hat of clinician, academic, researcher, insurer or EHR vendor? We can all agree that pulse, weight, diagnosis, procedure, medication are all clinical data. But what about data that answers questions like:

  • What does feeling worse (or better) look like?
  • What works for me when I’m in pain (or scared)?
  • Where will I sleep tonight?
  • Are my kids safe? Am I?
  • Am I treated with respect?
  • Do I understand what doctors and nurses say to me?
  • Where do I go when I have a question or I forget what I’ve been told?
  • How do I get food from the grocery store?
  • How much can I afford out-of-pocket for my medicine?
  • What are the most important things in my life, for my future, for my health?
  • Can I live with this amount of pain or discomfort or indignity?
  • Do I have access to a computer or a phone?

Continue reading “Not collected? Not studied.”