By
Narinder Singh
| July 16, 2019
This is Part 1 of a four part series, introduced yesterday, based on my family’s experience with our mother’s unexpected and dramatic ICU stay and bilateral lung transplant. [Download the Complete Family’s Guide as a PDF] Even the air in the waiting...
By
e-Patient Dave
| April 10, 2019
It’s a big anniversary, this spring – this week, even. Ten years ago the whole issue of personal health data exploded into the headlines. It was about something I wrote here, not having a clue it was any kind of a big thing, but it ended up on the front...
By
Sarah Krüg
| March 12, 2019
“Vague but exciting…,” was the response Sir Tim Berners-Lee received when he submitted a proposal for an information management system (aka the world wide web) to his supervisor in March of 1989. Three decades later, we have hit a key milestone, and approximately half...
By
Casey Quinlan
| November 16, 2018
SPM members Casey Quinlan (yes, yours truly) and Jan Oldenburg were part of a trinity of folks debating the idea of paying people for the data they contribute to the digital economy, in healthcare and in all other sectors. Here’s the full version of the...
By
Geri Baumblatt
| October 15, 2018
Here’s the last in our series of posts by and about the outstanding speakers 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. Last chance: register here....
By
Janice McCallum
| September 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 and Casey Quinlan
| September 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
| August 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
| July 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
| June 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....
A Family’s Guide to the ICU, Part 4: The Human Aspect of CareJuly 19, 2019
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