Participatory medicine

Recent articles highlight challenges with holding providers accountable for the care they deliver. One of the major thrusts of efforts to transform the American healthcare delivery system has been to become more patient-centered and to allow patients to provide feedback that matters.

Emblematic of this is the emphasis on patient involvement in the final rules for the Shared Savings Program accountable care organizations (ACO).

Echoing former Centers for Medicare & Medicaid Services Director Don Berwick’s plea on the behalf of patients (“Nothing about us without us”), the ACO final rules emphasize patient engagement in governance, quality improvement and the individual doctor/patient interaction.

Michael Millenson’s white paper provides a summary of the patient empowerment movement.

The development of the patient activation measure (PAM) and the Center for Advancing Health’s 43 engagement behaviors has allowed us to study patient-centeredness with more specificity. Studies have shown that activated patients are less likely to choose surgical interventions, have better functional status and satisfaction, are more likely to perform self-management behaviors, and report higher medication adherence rates.

Healthcare policy experts and payers have embraced the argument outlined above, and patients’ reports of their satisfaction with both physicians and hospitals have increasingly been used to calculate financial rewards.

Continue reading “Should Your Review of Your Doctor Be Taken Seriously?”

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Is participatory medicine poised to become a mass movement? A weekend gathering of patient activists and supporters at a “Partnership with Patients” conference this past weekend offered some important clues about opportunities and obstacles.

The meeting was conceived and created in a matter of weeks by artist and activist Regina Holiday, with a little help from a lot of friends and an offer of a casino-turned-corporate-meeting-center by Cerner Corp. in Kansas City. But this meeting was unusual for reasons other than location. It was not patients protesting the high cost of care or barriers to access or the slow progress of research into their disease. Instead, they were trying to transform the way doctors and others throughout the health care system relate to every patient with every disease.

What was even more unusual, perhaps even unique in the history of medicine, is that they were joined in partnership by health care professionals – doctors, nurses, information technology specialists, medical communicators and others. The focus was on constructing something new, not just complaining about the old.

Continue reading “Will “Partnership” Meeting Propel Mass Movement?”

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ePatientDave and Giles Frydman have been working on the Society of Participatory Medicine for a while  and Alan Greene MD will be the first President. Now there’s a editorial board for the Journal of Participatory Medicine. The editors will be Charles W. Smith (who announced it at the end of last month at his blog eDocAmerica), and Jessie Gruman, patient extraordinaire from the Center for Advancing Health. There’s also an advisory board including Kevin Kelly, Adam Bosworth, Esther Dyson, David Kibbe, Howard Rheingold, Eric von Hippel, & Peter Yellowlees—which is a good mix of Ubbergeeks and geeky doctors.

To me there’s a slight difference between Health 2.0 which in my definition is more about using tools and technology to change the health care system, and participatory medicine which is centered around the e-Patients blog. But that hasn’t stopped other definitionistas (yes, I mean you Ted!) from crunching them together—and of course any tension between them is significantly less than the common purpose of changing health care using the best tools available. Continue reading “The Journal of Participatory Medicine”

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Susannah Fox

More than half of the entire adult population in the U.S. used the internet to get involved in the 2008 political process. Blogs, social networking sites, video clips, and plain old email were all used to gather and share political information by what Lee Rainie has dubbed a new “participatory class”:

  • 18% of internet users posted comments about the campaign on a blog or social networking site.
  • 45% of internet users went online to watch a video related to the campaign
  • Half of online political news consumers took advantage of the “long tail” of election coverage, visiting five or more types of online news sites.

And guess what? This participatory class of citizen is not ready to go back in the box. Many people expect to stay engaged with the Obama administration and you can bet that the rise of mobile applications will accelerate this trend toward engagement for lots of Americans.

My new survey data shows that not only is there a participatory class of citizen, but there is a participatory class of patient.

Most people with a health questions want to consult a health professional – no news there. Second most popular choice: friends and family. Third choice: the internet and books (yes, books are still popular, even among internet users!). But participatory patients (aka, e-patients) are using the internet in new ways. They not only gather information, but seek out expert opinions, such as the “just in time someone like me” who holds the key to their situation.

Continue reading “Participatory Democracy, Participatory Medicine”

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