e-Patient Dave

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November 9, 2022 By e-Patient Dave Leave a Comment

“From #73cents to FHIR”: keynote at the Redox Connect customer conference

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.

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Filed Under: Events, FHIR, Health data, Leadership, public speaking Tagged With: #gmdd, Cures Act, Cures Rule, fhir, health data, health IT, patient empowerment, patient engagement, Redox Leave a Comment

September 20, 2022 By e-Patient Dave 1 Comment

The Autonomic Nervous System: the Medical Frontier of the 21st Century

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!

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Filed Under: Events Tagged With: dysautonomia, patient communities, pots 1 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:

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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

March 28, 2022 By e-Patient Dave 1 Comment

Free Web lecture: An e-patient faces glaucoma. Not good. Time to learn.

I’m thrilled to report the third entry in my new blog series “We’re back!”, as the conference speaking business resumes. This one is a Web event – free to the public – hosted by the National Network of Libraries of Medicine. See the Register Now link here.

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Filed Under: Events, Glaucoma, Government, public speaking 1 Comment

February 28, 2020 By e-Patient Dave Leave a Comment

Kidney Cancer Patient Symposium – free with livestream, Friday March 6


Free livestream: https://vimeo.com/event/23660


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Filed Under: e-patient resources, Events, patient engagement, Patient-centered thinking Leave a Comment

June 19, 2019 By kristin.gallant 2 Comments

NEHIMSS 2019: teaching Patient-Clinician Partnership with role play – and a song

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Filed Under: Events, Participatory Medicine, Patient-centered tech, Patient-centered thinking, public speaking 2 Comments

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