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What if health care…?
For over a year I’ve been the accidental manager of a community garden. All I did — I swear — is point out an open plot of land and people started pitching in, planting, asking friends to join them....
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Caregivers, please share your stories
The Pew Research Center will release a new report about caregivers in June. As we prepare, I’m looking for stories to share with reporters so they can better understand the context for our data. If you...
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Raw data now! Open science! Sign Ben Goldacre’s #AllTrials petition
Click to go sign the petition Last year during TEDMED 2012, in “The cancer at the core of evidence-based medicine”: Ben Goldacre on the missing data, we covered the vitally important news that a lot of...
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NY Times: “Do clinical trials work?”
By Ruth Gwily for The Times Just a quick note on something I’m happy to say we’ve been hollering here for years: A lot of what passes for “evidence” from peer reviewed medical journals is...
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Screw HIPAA: Here’s a Look at My Doctor’s Office
A few months ago, I complained about the layout of one of my doctor’s offices. There’s a rough layout drawing of the office waiting area to the side there. I’m standing just in front of the number 1,...
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e-Patient Manifesto: “Patients Included”
In 1517, Martin Luther nailed his “Ninety-Five Theses” to the wooden doors of Wittenberg Cathedral, sparking a global reformation of the Christian faith that’s still going on today. In the 1950s and...
View Article“Imagine someone had been managing your money and you thought you weren’t...
Five years ago last week, I posted this. A lot has changed since then. Next week I’ll be re-posting what happened next, back then. The subject is still just as valid, so do think about it. Here’s a...
View ArticleAn angry veterinarian says “I don’t understand…” (Reprise five years later)
It’s five years since the ARRA/HITECH legislation was passed that pretty much mandates that American medicine has to computerize. Policies created since then have been enormously effective at moving...
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The Iceberg Waiting for Your Health Care Data
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...
View ArticleThe Doctor as Patient
Charlotte Yeh is the Chief Medical Officer of AARP Services, and has had a long career in government and as a practicing emergency physician. (Our paths first crossed years ago when we were both...
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Guest post by Duncan Cross: I Sent This Letter To A Doctor Who Pissed Me Off
Ordinarily we limit guest posts to current members of SPM, but this is an extraordinary case. Duncan Cross’s post illustrates so many aspects of how empowered, engaged, activated patients view their...
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Sep 26 – Patient Summit on Diagnosis in Alexandria, VA
Diagnostic Error in Medicine 8th International Conference To all in the Washington/Baltimore/northern Virginia area (and elsewhere if you care to travel!): The patient committee of the Society for...
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When no other feedback channels exist, the Patient Advocate becomes a single...
This blog welcomes guest posts from SPM members on relevant topics. One of our Society’s newest members, Susan Cournoyer, is a tech industry analyst, and is familiar with the concept of systems that...
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Individuals’ Rights to Their Health Information: The Federales Awaken
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...
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Peter Elias: a physician experiences a portal from the family side, and… #fail
Peter Elias working with a patient, from the SPM website Peter Elias MD (in photo at left) is a member-at-large on the board of our Society for Participatory Medicine. See his earlier posts here....
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Got Candles? Happy 30th Birthday to the World Wide Web!
“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...
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Patient/caregiver letter supporting proposed HHS rules on improving flow of...
Many people are asking if they can add their stories or their signatures. Please do so in comments! We’ll copy signatures into the body of the post as time allows. We, the undersigned, are patients,...
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Turning Pain into Power through Advocacy
When I heard the words, “You have Lupus,” I didn’t know the magnitude of how much my life was going to be tested. It started in 1980 when rashes and unexplained fevers plagued my life. Seeing doctors...
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Active Surveillance 101: A New Resource Driven by Patients and Crafted With...
Active surveillance (AS) for low-risk to intermediate-risk prostate cancer has been “an overnight success” that took 30 years to move from academia to mainstream practices. Since 2014, AS — close...
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What My Second Lease on Life Taught Me about the Power of Human Connection
I was born with a congenital heart defect called bicuspid aortic stenosis with regurgitation. When I was 12 years old I was told I needed immediate open-heart surgery. As the anxiety, depression and...
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