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December 2, 2022 By e-Patient Dave Leave a Comment

When Patients Design the Care They Want: the Boston Women’s Health Collective

A slide I often use

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:

… genuinely empowered people living their lives and managing their health according to their own priorities, in partnership and consultation with physicians as needed. 

[Read more…]

Filed Under: Culture change, Innovation, Leadership, Participatory Medicine, Patient-centered thinking Leave a Comment

April 25, 2022 By e-Patient Dave Leave a Comment

Speeches as empowerment: transforming the culture of care

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:

[Read more…]

Filed Under: Clinical trials, Culture change, Events, Innovation, Participatory Medicine, patient engagement, public speaking Tagged With: clinical trials, healthcare speakers, participatory medicine, patient empowerment, patient engagement Leave a Comment

November 5, 2021 By e-Patient Dave Leave a Comment

Ethics and barriers: BMJ webinars on patient access to medical records

The BMJ (formerly the British Medical Journal) continues to lead the world in patient & public partnership with clinicians, including more coverage of patient empowerment topics than anyone else I know in medical publishing. Some of the issues are unique to Britain but many are global cultural issues – not least being the balance of power between clinicians and the patients they serve.

[Read more…]

Filed Under: Culture change, Government, Health data, Health policy, Innovation, patient engagement, Patient-centered tech Tagged With: health IT, medical records, OpenNotes, patient empowerment Leave a Comment

October 12, 2021 By e-Patient Dave Leave a Comment

New podcasts and webinars, #2: Harry Glorikian’s “The Future You” (two parts)

I mentioned last week that there’s been an upsurge in people reaching out to carry forward the message we e-patients have been evangelizing for ages. Hallelujah!

That post was an interview for the HIMSS Learning Network. Today’s is really exciting: Harry Glorikian, author of MoneyBall Medicine, has a new book coming, The Future You, about the new world of data-empowered medicine, with a rebranded podcast to match, and he asked me to be his first guest! Ya think I was ready for that?? It went great – so great he made it his first two episodes!

[Read more…]

Filed Under: FHIR, Health data, Innovation, Participatory Medicine, patient engagement, Patient-centered tech Leave a Comment

November 23, 2020 By e-Patient Dave 2 Comments

#LongCOVID patient researcher Hannah Wei kicks off FHIR DevDays

For two years I’ve blogged about DevDays, the twice-annual software developer conference for the FHIR software standard for health data. November 17-20 was this fall’s edition, and in the opening session, Hannah Wei gave a keynote unlike any other.

Fifteen minute video:

[Read more…]

Filed Under: Coronavirus, FHIR, Health data, Innovation, Patient-centered tech Tagged With: coronavirus, covid, health data, long haul, longcovid, patient centered care 2 Comments

May 18, 2020 By e-Patient Dave 1 Comment

A glimpse of how FHIR works, for people who’ve fought to get their data

This is a quick post without a lot of explanation, targeted to perhaps a small number of people but perhaps also intriguing to a lot more. This image is a quick summary of the post below:

[What’s FHIR? I’ve been blogging about it for more than a year; here are all the posts, newest first, though if you’re new to the concept please start here. This post doesn’t require understanding FHIR’s significance, but it sure helps.]

The context: someone needs to get their health data.

[Read more…]

Filed Under: FHIR, Health data, Innovation, Patient-centered tech 1 Comment

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