Power to the Patient!
An analogy came up last month that I think bears discussion, and I wonder what you think. Everyone knows we have to watch out for AI’s dangers, but the same was true when cars were new. And electricity. And machinery. How do we learn to move forward – to enjoy new power – without horrible risks??
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This post is a departure from my usual: it’s about a specific company, for a specific reason. First, some background.
Since 2007, Thanksgiving has been a time of reflection for me. That’s the year I was diagnosed as almost dead, yet by Fall I got to hear “looks like you beat it!” What a Thanksgiving that was.
I know firsthand that when a person like me is in need, being cared for and about makes all the difference.
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In August Medical Futurist Bertalan Meskó and I published Patient Design: The Importance of Including Patients in Designing Health Care in JMIR, in the Journal of Medical Internet Research (JMIR). It ties together aspects of both our work. He’s a medical futurist, less than half my age, with a clear vision of how medicine will work in a future unencumbered by today’s limits. For me, an advocate for patient empowerment, it’s rooted in patients having the power to get the care they want. Our views come together in the idea of patients designing the care they want. From our abstract:
[Read more…]… genuinely empowered people living their lives and managing their health according to their own priorities, in partnership and consultation with physicians as needed.
Patient voices have been working for decades to achieve access to their medical records, which have always been locked up in the hospital. No more: new rules went into effect on October 6 that mean all your health data must be available for download by apps, online, by end of year.
This so-called “Cures Rule” is part of the continuing work of the 21st Century Cures Act enacted by Congress in 2015. The Act includes many other things to improve development of cures, but for patients a vital new requirement is that health data must now move easily between computers. It’s common sense for everyone in healthcare, and for patients it’s an immense win for justice (fairness): at last we can see about ourselves what the people treating us can see.
[Read more…]Today in an email thread I realized it’s a decade since the OpenNotes work started, via Tom Delbanco and Jan Walker, and now promoted so brilliantly by Liz Salmi. How great that back then my PCP Danny Sands and I were among the first crew of OpenNotes study participants!
I decided to mark the occasion by creating an /OpenNotes page on my site, listing all the blog posts and articles that have emerged as part of the work.
(Interesting to observe: before cancer rearranged my life, I don’t think I ever stuck with any cause for ten years straight. Funny how that happens.)
Updates May 8:
I’ve often blogged and spoken about the many parallels between the women’s movement and the patient empowerment movement. Here’s one perfect quote from Miriam Hawley, one of the founders of the Boston Women’s Health Book Collective, whom I met last year:
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