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The Precision Medicine Initiative, Patients’ Health Data Rights and You

by David Harlow | Feb 27, 2016

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...

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

by e-Patient Dave | Jan 18, 2016

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...

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

by e-Patient Dave | Dec 13, 2015

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...

BMJ seeks more patients to be reviewers on articles about their conditions

by e-Patient Dave | Nov 27, 2015

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...

Crohnology blog: “Doctor Thyself: How Patients Self-Care”

by Ileana Balcu | Aug 20, 2015

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...

PHI Data Breaches May be Increasing, But It’s Not Impacting Our Sharing

by John M. Grohol, Psy.D. | Apr 15, 2015

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...