e-pts resources

 

e-patient stories, e-pts resources, general, key people, patient networks, pt/doc co-care, pts as teachers

Guest post by Annette McKinnon: Power Equality: Why Is My Silo Two Miles Away?

-+*This blog welcomes guest posts from SPM members on relevant topics. This is a blog post by Annette McKinnon, an e-patient in Canada. Annette is an enthusiastic advocate for patient inclusion in research and healthcare decision making. She has had rheumatoid arthritisfor the past 30 years, and has a background in market research. She attended […]

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e-pts resources, general, medical records, policy issues, pt/doc co-care, reforming hc, trends & principles

#NoMUwithoutME: Primary School Edition

-+*        Created using Bitstrips. Text engine: Up Goer Five, “Can you explain a hard idea using only the ten hundred most used words? It’s not very easy.” Bottom line: When you go to the doctor, any doctor, always ask for your records. Ideally, electronic versions of your records that you can look […]

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e-patient stories, e-pts resources, general, net-friendly docs, positive patterns, pts as teachers

Regina Holliday’s whooping cough story in PharmaTimes: “Treat us as partners”

-+*SPM member/legend Regina Holliday, a powerful force for grass roots empowerment and creator of The Walking Gallery of Healthcare, got whooping cough (pertussis) this winter, despite having been vaccinated just a few years earlier. The UK magazine Pharma Times interviewed her for their inside-back-cover feature in the current issue. She details how she took advantage […]

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e-pts resources, key people, net-friendly docs, news & gossip, policy issues, reforming hc, research issues

NLM Director Donald Lindberg is retiring. Speak up: what’s next for the Library?

-+*Dr. Donald Lindberg, long-time director of the National Library of Medicine, is surely the single most-quoted authority from “Doc Tom” Ferguson’s e-Patient White Paper. In almost every speech I’ve given in the past five years I’ve used Doc Tom’s quote of Dr. Lindberg in the White Paper: “If I read and memorized two medical journal articles […]

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e-pts resources

CHCF’s iHealthBeat podcast on online communities

-+*One of the California Health Care Foundation’s regular projects is iHealthBeat, “Reporting technology’s impact on healthcare.” Wednesday they released a five minute podcast on patient communities, which are of course a core activity of engaged patients and thus of participatory medicine. I was interviewed for it, as was the highly participatory Dr. Eric Topol, author of […]

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e-pts resources

For the #MedX “year of doing”: “Don’t be a nail”

-+*Our movement seems to be entering a turning point, and today Paul Levy’s blog had a great example. The change is embodied by the 2015 theme of our e-patient conference buddies at Medicine X: “This is the year of doing.” In my view this means two things: bringing it from concepts into specific actions everyone should […]

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e-pts resources, patient networks

The diverse nature of patient communities: a prostate cancer patient’s experience

-+*On my own site I have a (loose, rough, poorly managed) list of patient communities, gathered ad hoc, as time allows. Today I posted a new contribution of a different sort – the experiences of a prostate cancer patient I met at a speaking event last week in Vermont. He’s involved with three different communities, […]

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e-pts resources, pt/doc co-care, shared decision making

Zack Berger from #MedX on uncertainty and decision aids

-+*Regular readers may recall SPM member Zack Berger MD PhD’s July post here The pledge of the patient-centered physician. Zack is one of the many SPM members attending the Stanford Medicine X conference this weekend and sends this Saturday night report, cross-posted from his book’s blog. We’ve often written here about shared decision making, which helps patients […]

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e-pts resources, medical records, PM Tech, trends & principles

Let’s crowdsource what a “good” medical record tool for patients is (and list some products)

-+*Ah, social media. On Facebook a couple of hours ago, Swedish SPM member Sara Riggare posted: Responses were quick and robust: “Web MD has an app that you can download that I use. I find it pretty useful.” – Mark Burek “That’s a sticky question. I tried Caresync ([SPM member Amy McFall Gleason’s app) and thought it useful. […]

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e-pts resources, key people, patient networks, trends & principles

Communicating the experience of illness in the digital age

-+*At 9am on Sunday, Sept. 7, 2014, Stanford Medicine X will host a discussion led by Pamela Ressler, Colleen Young, Meredith Gould and me about the power and pitfalls of people sharing their health experiences online. We are “flipping” the panel by sharing resources and participating in online discussions throughout the summer, hoping to include […]

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