e-Patient Dave

Power to the Patient!

By 7 Comments

A declaration of the future of caring: careful, kind, “minimally disruptive”

KER "Treatment That Fits" diagram
The basic idea of minimally disruptive medicine (from minimallydisruptivemedicine.org)

To start 2016, a vision.

In 450 events in 14 countries, I’ve heard a lot of thoughts about healthcare: its challenges, its possibilities, why change is hard, and who should do what to make things better. Easily one of the most inspiring voices I’ve heard is Victor Montori at the Mayo Clinic’s “KER Unit” (Knowledge and Encounter Research Unit). Here are two resources to briefly introduce you to his work; another will come later this week.

One of his fundamental principles is what he calls “minimally disruptive medicine.” While so many articles in magazines and journals complain about patient “compliance” (i.e. doing what the doctor dictated),  the KER people are nearly obsessed by questions like “Will this work in the patient’s life??” and “Wait – is this what the patient really wants?” A great quick overview is on their home page.

In an email this morning Victor said:
[Read more…]

By 1 Comment

Health 1.0, 2.0, 3.0: today’s flow of information has changed what’s possible

This 51 second animation accompanies my article last week in the BMJ, “From Patient Centred to People Powered: Autonomy on the Rise.” The video expresses, concisely, a slide that for years I’ve presented in 3-5 minutes. It’s an idea first published back in 2010 by Lucien Engelen, during the same time period when he was preparing for the TEDx Maastricht event in April 2011 where I spoke. It shows how the flow of valuable information has changed, which makes new things possible, as in all other parts of life.

From the BMJ article: [Read more…]

By Leave a Comment

New BMJ article: “From patient centred to people powered: autonomy on the rise”

Screen capture of the article on the BMJ site

I’m thrilled to say that the BMJ, formerly the British Medical Journal, has just released a new article I wrote about the “social movement” aspect of our work, including the rationale for listening to the patient perspective.

Intended for medical audiences around the world, it’s part of a big, 21-article multimedia “Spotlight” supplement that will be in Thursday’s print edition; it was all released online yesterday. Over on the e-patient blog I posted the full list of articles, including the names of other members of our Society for Participatory Medicine who are in this issue. Big participation, big visibility!

This supplement, appearing in one of the world’s top medical journals, may well be the biggest moment yet in the history of our movement. It’s got hours of reading and listening, with contributions from eight countries, if I counted correctly.

Those of you in my generation – the era of many social movements – will relate to the parallels with what’s happening today: a whole class of people whose voice has been considered “not worthy” is speaking up, demonstrating capability, and pushing back when we’re told to “stay in our place.” :-)

Is it time for a new scientific field?

[Read more…]

By 1 Comment

How great and bad “experts” treat you in Mac care – and lessons for medicine

Henry Feldman
The great: Dr. Feldman (no photo of Eli is to be found!)

For the past year I’ve had a disastrously bad experience as a Mac user, to the point where I had long Facebook discussions on how to select a Windows “ultrabook” – super thin and light, like my current Macbook Air. The final (at last!) happy outcome, just last month, shows the difference between two things that are vital in medicine too:

  • Capable wizards vs clueless goons
  • A caring approach, listening to the person who has the problem, and honoring his (my) observations and concerns.

Ultimately a friend at Beth Israel Deaconess (a doctor!!), Henry Feldman, and his colleague Eli Kaldany, figured out what my problem was – in August, nine months into the problem. (They saw me bitching on Facebook.) They nailed the problem in less than an hour. And, ironically, when another problem happened in September, I finally found someone capable at Apple – and discovered a bit of news I’ll share in a moment. [Read more…]

By 2 Comments

A new vision of telehealth: the “epital” – getting the care you need while “outmitted”

Thanks to Torben Rügge of Cure-It for this tip. We met at the Karolinska Institute event I wrote about recently.

People in medicine are talking endlessly these days about patient-centered care.  (Some prefer “person-centered.”) Many are asking what the term means, and some patients are responding, “Thanks for asking! How far will you let us take it?”

Here’s a vision of a future healthcare system, presented at TEDx Copenhagen in 2012 by Danish Dr. Klaus Phanareth. I’m amazed that I haven’t heard of this talk – it’s aligned with my way of thinking and very thought provoking. 14 minutes. (Email subscribers, if you can’t see the video, click here.)

The scripted scene (at 9:52) is of course idealized, with your own doc and your own health coach happily available the moment you call. But aside from that, think about what doses of care the patient is getting … and think about whether she would have gotten what she needs, if she’d had to bundle up and get in a car to go get it.

Then think about your own medical incidents, your kids’, your parents’… think about the future. Can you get the dose of care you want?

People in other countries are working on things like this, and I see no reason why we all shouldn’t.

Next time you need care, ask yourself: do I need to go see someone face to face?  Sometimes we do, but …

If we really want care to be patient-centered, are we ready to make the whole thing be as convenient as we’d like? What are the obstacles?

Related post: my encounter with the Swiss medical system, which began with a Skype telehealth “visit” with my primary overseas. I liked that. That was patient centered!

 

By 2 Comments

“The system is squandering value in medicine” – guest post on West Wire

Click to visit the post on the West Health site
Click to visit the final post on the West Health site

West Health is a new initiative funded by Gary and Mary West, four separate organizations (read about them here), pursuing innovations in healthcare. The parent organization has a new blog on patient perspectives, “West Wire.” The first post on July 9 was an interview with friend / colleague / attorney Donna Cryer, then they invited me to submit a post.

I chose to blend the Institute of Medicine’s report Best Care at Lower Cost (which said our health system must be “anchored on patient needs and perspectives”) with California-style disruptive innovation, which is about serving the customer perspective. Their final post is here (edited to fit their word count); my original full text is below. My wording is more in-your-face than I usually am, but I chose my words thoughtfully, and I mean it.:-)
_____________

The system is squandering value in medicine.
Disrupt! Disrupt! Disrupt!

[Read more…]