cancer

 

positive patterns, pts as teachers, reforming hc, research issues, trends & principles

BMJ seeks more patients to be reviewers on articles about their conditions

This is a call for patient participation. We’re especially inviting members of our Society, but it’s open to anyone; feel free to circulate widely, especially to people with the conditions listed below! First, a bit of background, then the request. Regular readers know that the BMJ (formerly the British Medical Journal) is far and away […]

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positive patterns, pt/doc co-care

“The perfect thing a doctor can tell a patient with chronic illness”

That’s the title of a new post on the Mighty blog written by Catherine Richardson, a 23-year-old chronic illness patient from Vancouver, Canada, who also blogs at findingmymiracle.com. It’s about something simple, but helpful, that her doctor told her, which illustrates the sense of “We’re in it together” that e-patients so often seek from their clinicians. After listing some of […]

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general

Good Medicine: Choosing What to Do and What Not to Do.

The Choosing Wisely® campaign was launched in 2012 by the ABIM Foundation to encourage patients and clinicians to think about the tests and treatment choices they are implementing or requesting, and to avoid those tests that have proven to be overused and inappropriate. Over the past three years, this initiative has engaged nearly 100 national […]

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policy issues, positive patterns, pt/doc co-care, trends & principles, Why PM

Mythbusting, “demanding patient” edition

We’d bet good money that anyone who identifies as an e-patient has been led to believe that their desire to participate actively in their medical care marks them as a “demanding patient.” The perception of demanding patients is that they’re behaving like spoiled divas at a medi-spa, with their demands driving up incidence of unnecessary […]

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e-pts resources

CHCF’s iHealthBeat podcast on online communities

One of the California Health Care Foundation’s regular projects is iHealthBeat, “Reporting technology’s impact on healthcare.” Wednesday they released a five minute podcast on patient communities, which are of course a core activity of engaged patients and thus of participatory medicine. I was interviewed for it, as was the highly participatory Dr. Eric Topol, author of […]

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e-pts resources, patient networks

The diverse nature of patient communities: a prostate cancer patient’s experience

On my own site I have a (loose, rough, poorly managed) list of patient communities, gathered ad hoc, as time allows. Today I posted a new contribution of a different sort – the experiences of a prostate cancer patient I met at a speaking event last week in Vermont. He’s involved with three different communities, […]

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JoPM, key people

Jessie Christine Gruman, 1953-2014

I’m saddened (really saddened, as I write this) to report that one of the titans of our movement, Jessie Gruman, died unexpectedly yesterday at home in New York. She had long been sick, but the demise was sudden. In addition to the mountain of work she produced as founder of the Center for Advancing Health (CFAH), […]

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general, key people, net-friendly docs, positive patterns, pt/doc co-care, Why I joined

Thanks from the Philippines

In this guest blog post, member Beatrice Tiangco describes some of the pain and suffering in the Philippines after the typhoon and expresses her gratitude for the SPM, local community and overall support. Beatrice Tiangco is a practicing Medical Oncologist from the Philippines. She is also a Clinical Epidemiologist with a special interest in Personalized […]

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e-patient stories, net-friendly docs, pt/doc co-care, shared decision making

That is a Real Doctor

Guest blogger Peggy Zuckerman tells us a story about a young competent doctor and how transparency and openness is key to giving better care.  Peggy Zuckerman never intended to be a patient advocate, not even a patient! But after her diagnosis with a “tiny, scabbed-over ulcer”, later determined to be metastatic kidney cancer, she became a patient. […]

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general, how I became an e-patient, policy issues, pt/doc co-care, pts as teachers, shared decision making, trends & principles

Angelina Jolie, BRCA1, Public Health, Patent Law — & the Empowered Patient

Going public recently with her story of a prophylactic double mastectomy after testing positive for BRCA1 (a gene linked to breast cancer) via an op-ed piece in the New York Times, Angelina Jolie is clearly trying to get the message out that radical choices must sometimes be made in order to increase one’s chances of […]

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