by e-Patient Dave | Sep 28, 2018
Here’s the latest in a series of posts by and about the outstanding topics we’ve lined up for the Society for Participatory Medicine’s second annual conference on Oct. 17 in Boston, attached to the prestigious Connected Health conference. Register here. (Our #SPM2018...
by e-Patient Dave | Sep 17, 2018
For updates, follow Casey’s tweets on the #CochraneForAll hashtag – tweets by her and tweets tagging her. Casey will be a speaker at #SPM2018 on Oct 17, in a session with Ivan Handler of the Insightamation blog – “Thoughts and provocations on...
by Casey Quinlan | Aug 5, 2018
Guest post by SPM Lifetime Member Joshua C. Rubin, JD, MBA, MPH, MPP Last week, Facebook’s unprecedented stock price collapse triggered by concerns over personal data privacy, as well as same-day commentary regarding GlaxoSmithKline’s investment in 23andMe to gain...
by Danny van Leeuwen | Jul 22, 2018
Do you care about health data ownership and want to stay abreast of national initiatives to wrestle with and solve ownership issues? If so, this post is for you. What does it mean to own my health data? Is it like owning my car or my house? Is it like a copyright? Do...
by Michael Millenson | Jun 27, 2018
This is the second of two posts about this important policy issue regarding portability of our medical records. The first provided background, with link to a PDF of the comments SPM submitted, largely authored by Michael Millenson, who provides this essay for context....
by e-Patient Dave | Jun 5, 2018
Great update 20 months later: UCSF Hospital announced Jan 10, 2020 that they’ve made radiology images available through their MyChart portal, and Dr. Mark Kohli tweeted that it’s due to the speech that resulted from this blog post! Here’s their...
by e-Patient Dave | Mar 20, 2018
An important post from long-time SPM member (and former board member) Jane Sarasohn-Kahn (@HealthyThinker), cross-posted from her widely read Health Populi site. (The screen capture above is from this BBC article, which came out hours after Jane’s post below.)...
by Nancy Finn | Jun 2, 2017
Guest post by SPM member Vanessa Carter. See bio at end. In many countries globally, the e-Patient revolution has raised many significant questions about the role of empowered patients in an integrated health system, particularly with expanding access to Information...
by Danny van Leeuwen | Nov 11, 2016
On September 26, 2016, President Obama recognized Health IT Week by saying: We have worked to clarify an individual’s legal right to access their health information and transmit it where they choose—whether it’s to a family member or to their smartphone. These efforts...
by e-Patient Dave | Jun 7, 2016
https://vimeo.com/169280480 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...
by Nancy Finn | Jun 1, 2016
Computer Crime is the misuse of a computer or associated electronic networking system in order to commit illegal and unlawful acts. Computer crimes range from the illegal use of the internet to the unlawful accessing of information stored in computer systems. In...
by Casey Quinlan | Mar 23, 2016
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...
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...
by Danny Sands, MD | Feb 2, 2016
A fundamental precept of participatory medicine is that health care should not be a spectator sport—it’s best practiced in a participatory manner. This requires engagement from both the patient and the clinician. Yet the typical behavior of health encounters is not...
by David Harlow | Jan 12, 2016
A long time ago (in internet years), the original HIPAA regulations were promulgated. (The final Privacy Rule was published in 2000.) They’ve been tweaked and updated over the years, most notably in the “mega-reg” promulgated a few years back in...
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...
by Nancy Finn | Dec 22, 2014
MHealth Over 90% of the world’s population has some type of mobile phone, according to reports from the ITU (International Telecommunications Union and PEW research. mHealth will continue to be a major factor in technology and health in 2015, with new apps that...
by Nancy Finn | Dec 11, 2014
Rapid advances in the technologies giving scientists the ability to analyze, understand and identify the unique characteristics in the genome of every human being are now being translated into clinical applications that are actually prolonging the life of many...
by David Harlow | May 1, 2014
The Heartbleed web security exploit was first publicized several weeks ago. In the time since then, numerous web-based services have let their users know (some more clearly than others) whether and how their data security was compromised by this OpenSSL flaw that has...
by David Harlow | Mar 27, 2014
A Perspectives piece I wrote was published this week by iHealthBeat – Unlocking the Power of Health Data. In it I argue for patient-controlled sharing of rich data, as opposed to HIPAA-regulated stripping of identifiers in order to eliminate the risk to patient...
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