Patient-centered tech

April 27, 2015 By e-Patient Dave Leave a Comment

Washington Post: “How is the doctor-patient relationship changing? It’s going electronic.”

It appears the Washington Post is getting seriously interested in both the value of, and the consumer perspective on, health IT. This is a good thing, because (a) the whole purpose of healthcare is to take care of patients, (b) patients (that would be you) are the ultimate stakeholder, (c) no patient can contribute their best to their care if they can’t see the information, (d) nor can any doctor or nurse do what they’re trained to if they don’t have all the information, and (the good news) (e) we all can do better if we have the information.

This is not some crazy call-to-action from the fringes: it’s mainstream. I mean, three years ago the Institute of Medicine (the pinnacle of medicine in America) said medicine depends on “Patient-clinician partnerships” with “Engaged, empowered patients” and must be “anchored on patient needs and perspectives.” And, as my primary physician Dr. Danny Sands often says, “How can patients participate if they can’t see what I see?”

Tuesday’s Post has a pair of articles by Suzanne Levingston. I’m quoted in the first, and Dr. Sands is quoted in the second:

How is the doctor-patient relationship changing? It’s going electronic (above, ~1500 words) is a broad survey of how medicine’s landscape has altered because you and I have the internet, which means we can for the first time in history connect to two pivotal resources: information we could never see before, and each other. (My own story, including how the internet helped saved my life, is on my About page; it was also published in the British Medical Journal two years ago.)

There’s lots of health-care technology out there. How do you choose? (490 words – a sidebar, I presume) is a brief overview of the wide range of apps and info tools available today. As regular readers know, I view these tools as exactly analogous to the hundreds of desktop publishing tools that became available in its early years: examples of what can be done when data gets free, not all of which should be done, or even has any reason to get done.

But that’s the whole point: when information gets loose, innovators all over creation get to try things – at their own risk, with their own investment – and we-all out here get to make up our own minds about which of it is worth anything. The world shifts. As I’ve often said, “To innovators, data is fuel.” And I’ll never forget Todd Park (the US Chief Technical Officer) shouting from the stage, “Data Liberación!”

Also quoted in the bigger article are my respected colleagues Susannah Fox and Wendy Sue Swanson MD. Fox is widely felt in healthcare circles to be the wisest observer of what you and I actually do online (a debunker of many myths, with facts and heart), and Seattle pediatrician Swanson is almost legendary for her sober, reality-based, compassionate advice to parents in today’s ever-changing world.

Also cited is Dr. Eric Topol, who wrote the introduction to Let Patients Help, which I co-authored with Dr. Sands, and which is now in 7 languages (and a Chinese company just bought the rights). I’ve just finished reading Eric’s new book The Patient Will See You Now, which goes very very deep and wide into these articles’ topics. I hope to review it soon.

More later on why these realistic articles are important at this moment in time. Because just as with the rise of desktop publishing, and just as with Topol’s book, not everyone is happy with the coming change.

February 11, 2015 By e-Patient Dave Leave a Comment

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

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…]

January 19, 2015 By e-Patient Dave Leave a Comment

Exponential technology is reaching medicine. No, really.

I’m going to do something unusual (for me) – drop a video in here and not try to explain much about it. It’s about the future but don’t have any particular prediction, except that things are going to be changing really fast, as in scary fast. So you might want to loosen up your thinking. (I’m not affiliated with any of this; these are my own thoughts.)

Fair warning: this will look like lunacy, and I won’t get into big arguments about it here. You might want to watch this a minute at a time, perhaps pausing every time the whiteboard gets erased – it’s too much to take in all at once.

This is also the world depicted by my friend and colleague in Budapest, Dr. Bertalan Mesko (aka @Berci), who calls himself a “medical futurist.” Unusual, huh? Well, you can’t look at today’s medical reality (as amazing as it is) with the same mindset as you can with the “exponential” mindset.

Why do I think this is valid?

[Read more…]

September 14, 2014 By e-Patient Dave 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!

March 27, 2014 By kristin.gallant 3 Comments

“Patients + Providers + Technology = Engagement” (Guest post by Patti Brennan)

This is a real pleasure – a guest post by Patti Brennan (@PattiFBrennan), one of the people I admire most in the world of improving healthcare through patient engagement. I first met her through Project HealthDesign, one of the best programs sponsored by the Robert Wood Johnson Foundation: “Rethinking the Power and Potential of Personal Health Records.” I’ve also shared a panel or two with her at industry events – not nearly enough to suit me, though. :-)

Last year Project HealthDesign completed. One of its key subject areas was “ODLs” – observations of daily living. Here she explains the idea and lists some exemplary work she’s seen.

This guest post (I added some boldfacing) is long overdue – I’m just too busy for my own good sometimes! Thanks for this honor, Patti.

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Patients + Providers + Technology = Engagement

There’s a growing group of patient advocates, people like Hugo Campos or ‘our own’ Dave deBronkart (e-Patient Dave), who are calling for patients to be active and equal partners in their health—and that’s a goal that as a nurse I wholeheartedly support. At Project HealthDesign, we have worked to encourage two-way conversations between patients and clinicians, with both parties held in equal status. Clinicians are the trained experts in health care, but patients are the experts in their own lives and their own bodies. We believe that when both parties work together, more can be done to improve health care than either can do alone.

The key to forging these relationships and creating successful partnerships between patients and providers is technology.

[Read more…]

Is it time for a new scientific field?

Sharecare and Blue Button Host Twitter Chat to Help Consumers Take Control of Their Personal Health Information

Patients + Providers + Technology = Engagement