Should I or Shouldn’t I? Managing Uncertainty

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”

Interview: Danny on Urgent Care Radio

As many of you already know, on January 7, 2017, Minda Wilson interviewed me on the URGENT CARE radio show. Here’s a link to the episode. I’m best able to open the interview MP3 file with Music Player for Google Drive. I recommend the show, URGENT CARE. Many good interviews of caregivers, patients, clinicians, and policy experts. Minda, a health care attorney, knows her stuff. URGENT CARE is one of many shows on Radioactive Broadcasting. Let me know what you think of the interview!

For those interested, here’s a link to my full 2016 Health Hats Report. Read it to know what I’ve been up to in this 2016 transition year. I’m grateful to all of you!

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”

Recommit for the New Year

At year-end, I’m still on a mission to Empower people as they travel together toward best health. (Patients, caregivers, clinicians, direct care and support staff, communities)

  1. To understand and support each other
  2. To balance workload and capacity
  3. To achieve the best outcomes
  4. To communicate effectively during transitions of care
  5. To learn and share what works

These days more people in the health industrial complex listen to the voice of the patient, caregiver, and those others who care and serve. But the listening isn’t consistent. And the doing something sensible is sporadic and not often widespread. It’s gone from bleeding edge to just edge. I’m consumed with learning how to move this scary disappointing healthcare system an inch even though it needs to move 10 miles. I’m satisfied with the inch. The 10 miles is too much to fathom. I’m more aware than ever of having progressive conditions – MS and life. There’s a limit to what I can do. Continue reading “Recommit for the New Year”

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.

Health Planning Over a Lifetime

appalachian-trail-chrisbianchinj-by-michelepapaleoThree weeks ago I wrote about navigating our experiment of one. This navigation is health planning over a lifetime. Health Planning over a Lifetime includes having destinations or goals and deciding what needs to happen to get there. Who’s going to do what, by when? How will we  recognize when we’ve arrived. It helps to anticipate risks and barriers (those unexpected forks in the road), and have a plan to prevent or manage those unexpected forks. We’ll want to track and share progress. We need a table to sit down and process what we’ve learned, so we can change course when necessary. The health and wellness industry hasn’t provided us with the setting, the skills, or the technology for this vital health planning over lifetimes. It’s nowhere. Continue reading “Health Planning Over a Lifetime”

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”

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…”

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.