policy issues

 

policy issues, positive patterns, research issues

Prepare for NEJM’s major web event on sharing research data next week

In November we posted about an extraordinary development: NEJM Data Analysis Challenge: can others create value by seeing researchers’ data? The project has come to fruition, and the big event (free) is next Monday-Tuesday. The question for us: What’s the impact on patients? Join us along with @zakkohane for #NEJMDataSummit, a free web event on April 3–4, […]

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policy issues, research issues

Research & drug development news: European Public Health Alliance joins Europe-wide challenge to patent for Hepatitis C treatment

An announcement today in Europe (press release below) brings a new angle to the copious US coverage of drug pricing, such as predatory pricing of the EpiPen and the smirking, seemingly sociopathic Martin Shkreli. For the drug described below, the Médecins du Monde (Doctors of the World, below) blog says, “While [this drug is] a major […]

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e-patient stories, found on the net, policy issues, reforming hc

Angela Lundberg: Health Insurance & RA: Dangerously Uncovered

Member Angela Lundberg’s blog article was just published for RheumatoidArthritis.net. It discusses the high out-of-pocket costs of health insurance for people who already have insurance. Health Insurance & RA: Dangerously Uncovered Besides the benefits she got from Obamacare, Angela also touches on the burden of disease for the chronic patient: Overwhelmed with work and life […]

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medical records, policy issues, positive patterns, pt/doc co-care, trends & principles

A first: Participatory Medicine thinking in the Harvard Business Review

As kindlers and promoters of a social movement, our Society for Participatory Medicine keeps a keen eye out for signs of traction in credible places for what we’ve been advocating since 2009: Participatory Medicine is a model of cooperative health care that seeks to achieve active involvement by patients, professionals, caregivers, and others across the continuum […]

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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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general, policy issues, positive patterns, pt/doc co-care, trends & principles

OpenNotes hits TEN MILLION patient level

As regular readers know, for years we’ve been blogging here about OpenNotes, in which patients and their designated caregivers can read every word their clinicians write, so they can be more informed. The OpenNotes tagline, “Doctors and patients on the same page,” is no joke: I was one of the subjects in the study, and I’ve […]

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PM Tech, policy issues, positive patterns, trends & principles

“It’s not about the car – it’s about the drive.” #OpenAPS standing ovation for Mark Wilson.

This may be THE most important, articulate speech I’ve seen about profound progress in patient power – and why it matters. This talk by Mark Wilson about OpenAPS, at last Friday’s DiabetesMine D-Data ExChange 2016, contains a metaphor that’s just brilliant, explaining why patients would want to do this. Below the video are a few words for people who don’t yet […]

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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-pts resources, medical records, policy issues, positive patterns, pt/doc co-care

OpenNotes study in BMJ Quality & Safety finds patient-doctor “relational benefits”

As regular readers know, we’ve written many times about OpenNotes, the project funded by Robert Wood Johnson that blew the doors off of beliefs that bad things happen when patients see their charts. (We blogged about the original results in 2012.) Now a new study in BMJ Quality & Safety adds the results of a […]

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