Power to the Patient!
On Tuesday I attended one of the most inspiring events in the annual calendar of health events: the Leapfrog Group’s annual meeting and awards ceremony. I could talk all day about what an important organization this is, because they don’t just do great work, they’re getting results in the world.
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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.
I’m burning my way through this book, which was just released last week. It’s a compilation of first-person essays and advice from twenty Long COVID patients and experts. Curated by long-hauler Fiona Lowenstein, The Long COVID Survival Guide strikes me as street-level gut-punch practical. I don’t think any of us – patient, family, clinician or government – can feel we understand this condition without reading these essays.
I was hooked when I discovered, in the first patient story, that hives can be a result of Long COVID … which explains the weird, unexplained hives my wife had 4-6 weeks after COVID. Nothing like some front-line patient reality!
That’s a strong example of a big shift that’s happening in medicine: shifting away from expecting doctors to know everything important, and toward doctors actively partnering with the sick people. And by “partnering” I don’t mean asking patients’ opinions: I mean actually sharing the work, acknowledging the value of patients’ work, and sharing decision making – not just on individual cases but on development of remedies and priorities for research.
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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…]In July I gave a virtual talk for Dysautonomia International. Dysautonomia is a family of different conditions, sometimes surprisingly diverse, all related to the autonomic nervous system (ANS). A patient-started and patient-run organization, Dysautonomia International is doing a stupendous job of educating and advocating about this field. The purpose of my talk was to encourage the membership, too, to be proactive in speaking out about how they see things.
The video below is the entire 82 minute closing session of the conference. My talk starts around 24:00, but I encourage you to watch those first minutes, to listen in as patient/founder Lauren Stiles presents what the organization has been doing and introduces this year’s three award winners. This is a great advocacy organization!
[Read more…]Speaking isn’t just a business – it’s a vehicle for accomplishing what we really need: changing how people think … especially, empowering them to take effective action, to become involved in their health. Here’s a photo from a speech to radiologists, encouraging them to share images with patients:
