research issues

 

policy issues, positive patterns, research issues

NEJM Data Analysis Challenge: can others create value by seeing researchers’ data?

This is big. Please share it with anyone you know who’s a believer in open data. You may have heard that back in January the New England Journal of Medicine created a firestorm by saying “parasites” about people who want to see a researcher’s original data. Many (including Vice President Biden, at Health Datapalooza (video)) have objected strongly, saying […]

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e-patient stories, key people, positive patterns, research issues

e-Patients as journal authors: Sean Ahrens self-experiment published in a major journal

We’d love to start a list of other patient-authored papers and posters – let us know in the comments! We know of Dana M. Lewis & Scott Leibrand’s poster about #OpenAPS in June – who else?? We’ve written before about e-patient Sean Ahrens and the Crohnology community he started.  In my view the most important […]

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ethics, research issues

e-Patient Basics: Avoid scams like BrightBod.com

As everyone knows, there’s garbage on the internet, in addition to the gold. For many examples of the gold, see the extraordinary comments on our Google mug post, one of our most productive posts ever. As for the garbage, twice this month I’ve been approached by a classic untrustworthy scam site, juicy enough that they […]

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policy issues, reforming hc, research issues, trends & principles

The Precision Medicine Initiative, Patients’ Health Data Rights and You

The recent Precision Medicine Initiative Summit at the White House saw dozens of private entities committing to join with the administration in supercharging the effort to enroll one million patients into precision medicine research programs, collecting and securely sharing data about them – including genomic data – all in an effort to crack the code […]

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e-patient stories, pts as teachers, research issues

Astounding #RareDisease e-patient story: Jill Viles, via @SusannahFox tweets

Longtime readers of this blog know that for years Susannah Fox was its heart and soul. She was a devoted friend of “Doc Tom” Ferguson, creator of the e-patient concept in the 1990s, and for years at Pew Research she was the dependable guru of Pew’s health research. (For a summary of her work see […]

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positive patterns, pt/doc co-care, pts as teachers, research issues

“Patients organise and train doctors to provide better care”: patients writing in the BMJ

As SPM advances the cause of patients as responsible drivers of their care, we sometimes hear denials or complaints from physicians who feel that e-patients needy, uninformed, self-centered burdens on busy clinicians’ time. Well, here’s a juicy counter-example – in the BMJ, one of the world’s leading medical journals. Swedish SPM member Sara Riggare is co-author of this […]

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positive patterns, pts as teachers, reforming hc, research issues, trends & principles

BMJ seeks more patients to be reviewers on articles about their conditions

This is a call for patient participation. We’re especially inviting members of our Society, but it’s open to anyone; feel free to circulate widely, especially to people with the conditions listed below! First, a bit of background, then the request. Regular readers know that the BMJ (formerly the British Medical Journal) is far and away […]

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found on the net, positive patterns, pts as teachers, research issues

Crohnology blog: “Doctor Thyself: How Patients Self-Care”

The site Crohnology, well known patient community for patients with IBD (Inflammatory Bowel Disease), recently started focusing their blog on explaining IBD- focused research to patients. Their most recent blog post describes a study that studied what patients with IBD do for self-care. This is a topic dear to our hearts and we are doubly thrilled […]

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general, policy issues, reforming hc, research issues

PHI Data Breaches May be Increasing, But It’s Not Impacting Our Sharing

According to a new study in JAMA, data breaches into people’s protected health information (PHI) records are increasing: “[The] study that found almost 30 million health records nationwide were involved in criminal theft, malicious hacking or other data breaches over four years,” notes the AP reporting on the study. That’s a lot of data theft. […]

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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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