news & gossip

 

medical records, news & gossip, policy issues, reforming hc

“No MU without ME”: join the campaign to fight health data hiding

-+*Several edits made, 1-2pm There is a movement underway – a movement for patient liberation and autonomy – and the empire is striking back, interfering with our efforts. We – the whole movement, not just SPM – need your help. If you’re in a hurry, skip down to the Do this first section. But come back […]

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medical records, news & gossip

Proposed rule change will *reverse* data sharing requirements; Regina & Farzad call for “National Day of Action” to fight back

-+*Friday evening I got a tweet from SPM member Sherry Reynolds about something that had just happened in Washington. Today it unfolded. (Don’t miss her comment, too, about the history of this issue and her role in it.) Change can provoke upset. Technological change can be hard, especially in an industry that’s not known for its […]

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general, JoPM, news & gossip, reforming hc

“Lighting Goes to Ground”: Peter Elias responds to Paul Levy in JoPM

-+*Perhaps it’s time for an argument about how we’re doing this. Many of us in the Society for Participatory Medicine have long noted that what we’re up to here is nothing less than full-bore culture change. In my own speeches I often note that culture is the set of shared beliefs about what’s possible and expectations […]

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news & gossip, PM Tech, policy issues, reforming hc, trends & principles

SPM survey in Times Square: “Americans believe their medical data should be shared with their providers”

-+*National Survey Also Shows 87% Think Health Information Exchange Should be Free First paragraph updated next day In case you missed it last month, there was an unprecedented, huge moment in SPM’s history – we collaborated in a national survey of Americans’ views and wants regarding something we at SPM hold dear: getting doctors to make […]

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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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general, news & gossip, patient networks, positive patterns, pt/doc co-care, reforming hc, Stanford Medicine X, trends & principles

Big BMJ supplement on Patient Centred Care – with many SPM and MedX voices

-+*This is a great week for SPM, for our colleagues at the Stanford Medicine X conference, and for everyone else who’s been working for years to shift medicine’s thinking about the role of the patient: Yesterday the BMJ (formerly British Medical Journal) released a big, 21 article “Spotlight” supplement on “patient centred care.” The print edition is due out tomorrow, […]

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news & gossip, policy issues, positive patterns, research issues

A landmark day in the movement: Patients in the Front Row

-+*         Last Friday, 200 patients, advocates, scientists, doctors and researchers gathered at the White House to hear President Obama’s launch of the Precision Medicine Initiative. According to the President, precision medicine aims to tailor treatments to each individual. President Obama likened precision medicine to how we match blood transfusions to blood type – only now […]

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medical records, news & gossip, policy issues, positive patterns

Evidence: “Patients value direct, independent access to their medical exams.” Who knew??

-+*Edited an hour later – added Business Impact section at end Healthcare providers who are tracking patient experience and patient satisfaction, take note: a new study reported yesterday in Science Daily provides evidence that we patients really like it when we can view the data you collected about us. Even us over-50 ones, who are widely believed to be […]

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news & gossip, positive patterns, pt/doc co-care, pts as teachers, trends & principles

Mayo chief residents name SPM patient as Visiting Professor in Internal Medicine

-+*Wikipedia says “Participatory medicine is a movement in which networked patients shift from being mere passengers to responsible drivers of their health, and … providers encourage and value them as  full partners.” That movement gets a big boost in credibility today: the Chief Residents at the Mayo Clinic have invited SPM co-chair “e-Patient Dave” to be […]

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key people, news & gossip

A Farewell to Richard Rockefeller, e-Health Visionary

-+*The founders of SPM were saddened this weekend to learn of the death, in a private plane crash, of Richard Rockefeller, longtime friend of “Doc Tom” Ferguson. Rockefeller was credited in Ferguson’s white paper as “a White Paper Advisor.” – e-Patient Dave ________ When the single-engine plane Richard Rockefeller was piloting crashed in rain and fog just […]

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