Society for Participatory Medicine
e-patients.net blog
Why PM
pt/doc co-care, pts as teachers, shared decision making, Why PM
Action in the face of uncertainty
Science seeks certainty. The problem in medicine is, the body is complex and our knowledge is incomplete. People who want certainty – physicians or patients – are kidding themselves. And if we expect docs to be perfect, it’s a setup for dysfunction. Sometimes I hear of patients who believe their physicians dissed a proposed or experimental [...]
Read Moree-patient stories, others' e-patient stories, Why PM
Next “doctor as e-patient”: Howard Luks, MD
We’ve sometimes written about doctors as e-patients. (There are a lot!) Here’s the next. SPM member Howard Luks MD, orthopedist, had some symptoms. He spoke to his physician and GI doc, who gave him pills. It didn’t make sense to him. So he did what a lot of us do: “Then I headed onto a [...]
Read Moree-pts resources, medical records, Why PM
Is “Gimme my damn data” coming to radiology at last??
An essential aspect of participatory medicine – and Federal meaningful use criteria – is patients having a copy of their health data, so they can (a) understand it and (b) take it wherever they want. That includes radiology images. This is not a new issue here: three years ago our Jon Lebkowsky wrote here about [...]
Read Moree-pts resources, reforming hc, Why PM
The Patient Activation Measure (PAM): a framework for developing patient engagement
In any movement there’s a stage of maturation, where aspirations get fleshed out with specifics. That time is arriving for participatory medicine. As patient engagement (aka consumer engagement) earns attention, the question increasingly arises: “Where do we start? What can we do?” More specifically, “What do we mean when we say ‘patient engagement’?” CFAH Engagement [...]
Read Moree-patient stories, general, hc's problem list, pts as teachers, reforming hc, Why PM
“When I became a patient, I felt my identity slipping away.”
Participatory medicine requires an empowered partnership, in which patients express their wants and pursue their goals in partnership with providers who hear them and work together. And that’s not just about the biology. In this powerful narrative, a hospital executive becomes a patient, sees what it’s like to be stripped of everything and not heard, [...]
Read Morepolicy issues, reforming hc, Why PM
“Design and create a safe, decent, patient centered healthcare system.”
Yesterday the New York Times reported that some health insurers have applied to regulatory agencies to push premiums sharply higher - usually double-digit increases, while citizens are suffering. This falls on top of the 11 year history reported last year by the Kaiser Family Foundation: wages and inflation are up ~40%, while health costs and worker [...]
Read Moregeneral, practice variation, shared decision making, Why PM
Your Medical Mind: New book on *your* medical decision making process
In the past year I’ve come to see medical decision making as one of the key crucibles in which participatory medicine plays out. We’ve blogged several times about shared decision making (SDM), and by its nature it requires participatory thinking. A new book was published this week that adds substantially to my thinking: Your Medical [...]
Read Morepolicy issues, Why PM
BMJ commentary: “Enlist the patients’ help”
Tessa Richards, assistant editor at the British Medical Journal, has posted a well reasoned commentary on the BMJ site, “Enlist the patients’ help.” I’m no expert on the UN’s work here but what we seem to be seeing is, once again, paternalism: “We who know all will think about you patients (who are a problem) and decide [...]
Read Morepatient networks, Why PM
Guest post: Overcoming “battle fatigue” in an online support community
Another post from the Inspire.com network of patient communities. This one’s from New Hampshire resident Linnea Duff, an active Inspire participant who has Stage IV NSCLC (non-small-cell lung cancer). She blogs at Life And Breath. It’s often been said that different people face cancer and the threat of death differently. Two years ago SPM co-founder [...]
Read Moremedical records, policy issues, positive patterns, research issues, Why PM
ONC’s new Query Health initiative – what’s in it for e-Patients?
This is a guest post by SPM member John Sharp, Manager of Research Informatics at the Cleveland Clinic. John gets it about how information empowers healthcare and e-patients. I first met him at Medicine 2.0 in Toronto, 2009, after which he wrote an article for our Journal of Participatory Medicine, which began: “If you have not [...]
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