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general, key people, medical records, news & gossip, PM Tech, policy issues, positive patterns

BREAKING: Susannah Fox is HHS’s new Chief Technical Officer

-+*A quick first post, copied from Facebook: “Hugest news EVER! Susannah Fox​ is the new Chief Technical Officer at U.S. Department of Health and Human Services​. How amazing is that??” My comment on Susannah’s short post: “This wins my prize as the biggest government-based Mazel Tov in the history of the e-patient movement!  Bringing heart […]

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general, medical records, policy issues, pt/doc co-care

Patient Advocates Fight for Access to Medical Data: ‘It’s a Matter of Life and Death’ (KQED)

-+*The advo-cacy of individual SPM members is gaining increasing visibility in the mainstream media, driving home the human impact of policies that help – or don’t help – patients be active contributors to their families’ health and care. This is excruciatingly important as America debates the proposed rule changes for patient data access mentioned here last […]

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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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general

Patient POV: Seasons Change

-+*This came over my transom from a friend who works with a major medical school’s digital publishing group. Seems both relevant, and high impact. – Casey  Seasons Change by Candace Barnes i. When I left for the hospital The night was bitter cold, And snow lay on the ground. I know of weather what I’m […]

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Good Medicine: Choosing What to Do and What Not to Do.

-+*The Choosing Wisely® campaign was launched in 2012 by the ABIM Foundation to encourage patients and clinicians to think about the tests and treatment choices they are implementing or requesting, and to avoid those tests that have proven to be overused and inappropriate. Over the past three years, this initiative has engaged nearly 100 national […]

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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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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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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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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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general, policy issues

Accountable Care: Transparency of Fees Is Mandatory

image of HIPAA form

-+*Participatory medicine and healthcare system transparency warrior Cyndy Nayer put this up on her blog this week, and we’re re-posting it here because it’s a message that’s got to spread. A personal account of a transaction that went very badly, and rules of Health Reform were not followed In my surveys and seminars, physicians tell me […]

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