research issues

 

e-patient stories, pts as teachers, research issues

Astounding #RareDisease e-patient story: Jill Viles, via @SusannahFox tweets

Longtime readers of this blog know that for years Susannah Fox was its heart and soul. She was a devoted friend of “Doc Tom” Ferguson, creator of the e-patient concept in the 1990s, and for years at Pew Research she was the dependable guru of Pew’s health research. (For a summary of her work see […]

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positive patterns, pt/doc co-care, pts as teachers, research issues

“Patients organise and train doctors to provide better care”: patients writing in the BMJ

As SPM advances the cause of patients as responsible drivers of their care, we sometimes hear denials or complaints from physicians who feel that e-patients needy, uninformed, self-centered burdens on busy clinicians’ time. Well, here’s a juicy counter-example – in the BMJ, one of the world’s leading medical journals. Swedish SPM member Sara Riggare is co-author of this […]

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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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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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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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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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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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positive patterns, pt/doc co-care, pts as teachers, research issues

WSJ: “Researchers are asking patients to help design clinical trials.”

I could smack myself for not noticing this earlier, but it happened while I was at the ESMO conference (the “European ASCO” cancer conference) in Madrid last month: Amy Dockser Marcus has another great piece on how medicine is truly starting to engage with patients as active contributors to improving healthcare. Woohoo! The lede: Scientists […]

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positive patterns, reforming hc, research issues, shared decision making

Researcher seeks patient input: what should a stent decision aid include?

Preface by e-Patient Dave: We have often written here (see posts) about Shared Decision Making, in which patients are engaged in choosing among treatment options. A key method is to give patients a “decision aid” (DA) – a document or video that explains the options, with pro’s and cons. A vital question in the design […]

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found on the net, positive patterns, research issues, trends & principles

From BMJ: The BMJ’s own patient journey – Seeks to promote patient partnership by walking the talk

An interesting editorial in the BMJ (British Medical Journal) describes BMJ’s path to including patients in reviewing the articles and research published in the Journal. I hope this initiative will be successful and copied by the healthcare world. http://www.bmj.com/content/348/bmj.g3726 Our new strategy aligns with our “too much medicine” and “open data” campaigns and our support […]

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