reforming hc

 

pt/doc co-care, reforming hc

How can we cope with uncertainty?

We’ve written often about uncertainty, which is a recurring challenge in medicine and especially in participatory medicine, where issues of relationship and decisions are core. Some doctors have told me they were trained to display certainty even when things aren’t sure, and many patients (in my experience) want certainty about their diagnoses, or at least want their clinicians to […]

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reforming hc

Has your doctor ever talked to you like this Oliver Wendell Holmes quote?

A large part of our work here at the Society for Participatory Medicine is about changing culture of healthcare. In such times, I’d useful to look at our roots. Here’s an attitude tidbit from 1871 that our friends at the BMJ published sixteen years ago.   “FOUL,” you say – “That was 145 years ago!” Well, a […]

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key people, news & gossip, policy issues, positive patterns, reforming hc

Eric Dishman’s transformational speech on his last day at Intel: “Knowledge is survival”

I’ve known Eric Dishman for about five years, because we’re both kidney cancer patients. I’ve known that he’s a really sharp thinker, and a high-ranking executive at Intel, deeply interested in and involved in their work in healthcare. May 3 was his last day at Intel, and he gave what may be the most mind-expanding […]

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general, medical records, policy issues, pt/doc co-care, reforming hc, shared decision making

Just Say “No” to Medicare’s MACRA Tokenism

On social media and at meetings like Health Datapalooza, our favorite federal bureaucrats assure us of their commitment to open data and patient empowerment. But those are just soothing words; federal regulations are law. On April 30, I posted on e-patients.net an article entitled, “You Won’t Believe What Medicare Just Did on Patient Engagement!” In it, I showed how the long-awaited draft […]

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e-patient stories, key people, Patient Conference Participation, PM Tech, policy issues, positive patterns, pt/doc co-care, pts as teachers, reforming hc, trends & principles

#OpenAPS is bearing big fruit, part 2: Quantified Self presentation in San Diego

A truly significant moment in the history of medicine happened last Wednesday. I say that after attending almost 500 conferences and policy meetings in the past seven years, and I don’t say it lightly. Something many people think is impossible was presented live on stage: patients, informed and empowered by access to their data and access to tools, […]

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chapter reviews, DocTom10, reforming hc, Why PM

#DocTom10, post 3: The preface and the paradigm

Third in our #DocTom10 series, which started here.  Yesterday I asked that you download Ferguson’s white paper, the manifesto he was working on when he died unexpectedly, ten years ago tomorrow. Today we’ll look at the preface. The lost section: questioning the paradigm When I first read the White Paper in January 2008, this section was […]

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e-pts resources, general, reforming hc

Curiosity Got These Cats Their Health Data – from GetMyHealthData

Our friends over at GetMyHealthData have put up a terrific post breaking down exactly how/why all people can access their health data. Get YOUR data – it’s yours! Here’s the whole GIF-rich party. Cats have nine lives to figure out how to get their health data, but you don’t have that kind of time.  Here are […]

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e-pts resources, general, reforming hc

A hackathon for Open Access?? Check it out!

We’ve often written here about open access medical literature (freely available) vs “paywalled” journals. It’s a controversial subject, and this guest post is about an idea I’ve never heard of: a hackathon to explore the subject. (In the cartoon, “impact factor” refers to another controversial subject: how impressive science considers a journal to be.) Here’s the […]

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general, reforming hc, trends & principles

Pharma TV ads: Film at 11

SPM members Randi Oster of Help Me Health and Casey Quinlan of Mighty Casey Media made up two thirds of a three woman panel, “Patient Leaders Want To Kill Pharma TV Ads, Right Now,” at the 2016 ePharma Summit in New York last week (February 29 through March 2). This was the first time a group of […]

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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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