research

 

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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general, positive patterns, pt/doc co-care, reforming hc

Dell Medical School and the Future of Care

In 2009, along with several physicians, patients and health activists, I helped form the Society for Participatory Medicine, a nonprofit promoting “a movement in which networked patients shift from being mere passengers to responsible drivers of their health, and in which providers encourage and value them as full partners.” I was drawn into discussions about […]

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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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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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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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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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ethics, PM Tech, policy issues, positive patterns, reforming hc, trends & principles

Key legal victory moves medical device patients one small step closer to full access to their data

For whose benefit does the healthcare industry exist? For the investors, or the people whose needs are the reason for the industry? Facebook last night was celebrating a small but significant legal victory this week for the “gimme my DaM data” movement (“Data about Me”), of whom super-e-patient Hugo Campos is a well known example. […]

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e-pts resources, general, medical records, pt/doc co-care, pts as teachers, shared decision making, trends & principles

Guest Post by Mary Beth Schoening: a Definition of the Engaged Patient

This is a guest post by our member Mary Beth Schoening. Mary Beth is co-founder of Behavioral Health Innovators, Inc. an organization combining the power of human compassion with technology, advanced research and best practices from industry to encourage healthy behaviors.  As a digital health strategist, she has developed strategies and tools to engage both […]

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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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e-pts resources, general, key people, Patient Conference Participation, pts as teachers

Guest post by Annette McKinnon: Power Equality: Not Even on the Radar

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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