e-Patient Dave

Power to the Patient!

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November 16, 2022 By e-Patient Dave Leave a Comment

The Long COVID Survival Guide: essential new book with first-hand patient reality

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.

[Read more…]

Filed Under: COVID-19 Tagged With: covid-19, long covid, long haulers, longcovid, patient empowerment Leave a Comment

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.

[Read more…]

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

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

April 14, 2022 By e-Patient Dave 1 Comment

Patient engagement in glaucoma: new speech to medical librarians

This is my second speech to NNLM, the Network of the National Library of Medicine. As I said in announcing the first one,

Medical librarians (“medlibs”) have always been a magical resource, to me, because in addition to helping researchers and medicos, they can help ordinary people dig up information they need but don’t know where to find. It’s truly empowering.

[Read more…]

Filed Under: Glaucoma, patient engagement Tagged With: blindness, eye drops, glaucoma, home tonometry, patient empowerment, patient engagement, tonometry 1 Comment

November 15, 2021 By e-Patient Dave 9 Comments

Time to practice what I preach, again: this time it’s glaucoma.

I have a new diagnosis. This post starts with a little history for context.


Ten years ago, three years into evangelizing patient engagement based on my kidney cancer story, I posted Time to practice what I preach: I have skin cancer again. Noting the pattern that highly engaged patients everywhere follow, I blogged that it was time to …

[Read more…]

Filed Under: Participatory Medicine, patient engagement, Patient-centered tech Tagged With: eye pressure, glaucoma, iop, ophthalmology, patient empowerment, patient engagement, tonometry 9 Comments

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

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