Toward a New Science of Patient Engagement
On Friday I wrote here about the ten part blog series I recently did on Tincture, about why I believe the HL7 FHIR standard promises to be so important in achieving the long-felt need for patients to have access to every bit of their health data … to “let patients help” improve care, as my book and TED Talk have said for YEARS. But last fall I gave a talk that expressed my impatience. The title:
I want to let you know about a couple of important developments. First, I’ve started blogging on another site, Tincture, as well as here; second, there’s important news in the world of health I.T. (or personal health data or whatever you want to call it).
First, the health IT news: there seems to be good stuff happening! An international data transfer standard called FHIR (pronounced “fire”) has been in development for years, and is finally nearing the time when it will (we hope) change the world for those of us who want unfettered access to all our health data.
It’s not very visible to the general public yet, but a Google Image search shows tons of different graphics illustrating different perspectives. Google shows different people different things but here’s what I get:
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Sunday I wrote about the accelerating environmental changes I’m seeing, and how hard it’s become to think ahead. I wrote about a series of wire tree sculptures I saw in a shop that day, which instantly conveyed how it feels to push forward in that environment.
The next day I drove to Vermont to meet artist Randy Adams, selected this one and bought it. (Each sculpture is unique.) It’s perfect for the mood of the time: stiff, strong, resistant.
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One of my aphorisms in speeches is “If you live long enough, things change!” It always gets a laugh, but damn it’s true, and it’s happening faster and faster. So as I study the arriving future, I’m starting to feel like the severely windswept trees in the photo above. It is not pleasant, because how would you plan any campaign if all the rules were guaranteed to keep changing?
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Editor’s note: I’m enthusiastic enough about this that it may sound like a commercial, but it’s not, except that it’s a great example of the change I want to see in the world! I have no stake in this, and The Medical Futurist Institute makes no money on this, including related services. It’s a public service.
As patient empowerment spreads and gains acceptance, I’ve repeatedly observed an important gap: patients and clinicians, especially in primary care, are not sure what to do about this big “internet” thing. It’s not enough to encourage googling, because there’s junk on the internet. The best of all worlds is when my trusted authority – my primary care provider – is also my trusted guide to apps and websites.
But how do we structure these discussions? Most clinicians have had no training.
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Fifty years ago today, at Emmanuel College in Boston, a group of uppity women got together to talk about what was important to them about their health. Tomorrow night (Friday, May 10) some of them will gather again, with people from Suffolk University, which is taking over as Our Bodies Ourselves Today. (See that post.)
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