by Michael Millenson | Jun 3, 2016
On social media and at meetings like Health Datapalooza, our favorite federal bureaucrats assure us of their commitment to open data and patient empowerment. But those are just soothing words; federal regulations are law. On April 30, I posted on e-patients.net an...
by e-Patient Dave | May 24, 2016
As regular readers know, we’ve written many times about OpenNotes, the project funded by Robert Wood Johnson that blew the doors off of beliefs that bad things happen when patients see their charts. (We blogged about the original results in 2012.) Now a new...
by e-Patient Dave | May 23, 2016
A truly significant moment in the history of medicine happened last Wednesday. I say that after attending almost 500 conferences and policy meetings in the past seven years, and I don’t say it lightly. Something many people think is impossible was presented live...
by Michael Millenson | Apr 30, 2016
Quick summary for the impatient: Michael’s post urges public comment in the upcoming comment period, and ends with this: “If we in the patient community do not raise questions and objections to this critically important MACRA rule, you will definitely not...
by Susan Woods | Mar 15, 2016
Decades ago, there began a rigorous effort to tackle health care problems by focusing on science, improvement and measurement. A prominent driver of all things related to practice betterment has been The Institute of Healthcare Improvement, or IHI. Led by pediatrician...
by e-Patient Dave | Mar 1, 2016
It’s time again for the gigantic (50,000 people) HIMSS trade show – the Health Information Management Systems Society, in Las Vegas this year. These new SPM slides (on Slideshare) will be shown in the Consumer Engagement zone, summarizing our two surveys...
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 Peter Elias | Jan 25, 2016
The other night I participated in a very useful Google+ hangout with SPM members Adrian Gropper and Michael Mascia, and Michael Chen [of NOSH, explained below]. The discussion focused on a subject I think is incredibly important: the patient-centered health record....
by e-Patient Dave | Jan 21, 2016
A Twitter chat this morning, prompted by SPM member John Sharp, produced a rapid and wonderful change in an ongoing problem: so often articles about patients aren’t open to patients. In this case it’s an intriguing new article today in the esteemed New...
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 e-Patient Dave | Dec 17, 2015
Big news: a multi-foundation $10 million grant will spread OpenNotes access to fifty million more patients! Nearly 20% of America will have full access to their providers’ visit notes, so they can review them from anywhere! Regular readers know we’ve...
by e-Patient Dave | Dec 10, 2015
One pillar of participatory medicine, as SPM co-chair Dr. Danny Sands often says, is access to our medical records: “How can patients participate if they can’t see what I see??” But a major impediment to free-flowing information is incompetence or...
by Ileana Balcu | Nov 10, 2015
The series of blog posts at the online community website Crohnology continues for patients with IBD. Duncan Cross has a post that is interesting for anyone with an autoimmune or other disabling chronic condition: Am I disabled? It discusses the Americans with...
by Sara Riggare | Nov 1, 2015
I live in a small country: Sweden has the population of Michigan on the land area of California, so you shouldn’t really have even heard of us. But I guess that ABBA, IKEA, H&M and the Nobel Prize sort of helps :). Living in a small country of course has...
by e-Patient Dave | Oct 28, 2015
For whose benefit does the healthcare industry exist? For the investors, or the people whose needs are the reason for the industry? Facebook last night was celebrating a small but significant legal victory this week for the “gimme my DaM data” movement (“Data about...
by e-Patient Dave | Oct 25, 2015
Ah, the world of social media. This morning’s Boston Globe “Spotlight” investigative team (which won a Pulitzer in 2003) has this, citing local superstar hospitals Massachusetts General and its sister hospital, Brigham & Women’s. Within an...
by e-Patient Dave | Aug 17, 2015
The GetMyHealthData site was taken down at the end of 2022. Updated links here go to the page’s history on Archive.org. Please see my long-overdue post contributing to the @GetOurHealthData movement, on their blog. The more I’ve thought about all the...
by David Harlow | Jun 27, 2015
I recently hosted a Google Hangout on Air entitled Patient Reviews of Physicians: The Wisdom of the Crowd? (presented by The Harlow Group LLC in association with The Society for Participatory Medicine). I spoke with Niam Yaraghi (Center for Technology Innovation, The...
by Casey Quinlan | Jun 26, 2015
The Society for Participatory Medicine believes that an effective healthcare system is a collaborative one, where care providers and the patients and families they care for work together toward the best possible health outcomes. The importance of this partnership...
by e-Patient Dave | Jun 15, 2015
Today (11:59pm ET) is the deadline for public comments on the proposed rollback of “Meaningful Use 2” regulations for patient access to their medical records. SPM feels that this is a major issue for enabling patient-provider partnerships; as SPM co-chair...
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