patient networks


e-patient stories, general, how I became an e-patient, patient networks, positive patterns, pts as teachers, social media

Cleo Kordomenos: How My Opinion on Online Health Communities Changed

This is a guest blog post by Cleo Kordomenos. Cleo was my student in the New Media and Health Communication class I taught at TCNJ. More about the class is shared in this post.  Cleo Kordomenos is a Senior Communication Studies student at The College of New Jersey with a concentration in Health Communication and a […]

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key people, patient networks, positive patterns, pts as teachers, social media, Why PM

Teaching Health Communication with Participatory Medicine Highlights

In the Spring of 2016 I had the opportunity to teach the course New Media and Health Communication for an undergraduate class at The College of New Jersey. The class, designed by Dr. Yifeng Hu, already included an introduction to participatory medicine and patient participation in their own healthcare. With the help of numerous colleagues from the Society for […]

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news & gossip, patient networks, pt/doc co-care

National Doctors’ Day, clinicians, hacking open access, and remembering an e-patient

Somehow I’d never heard of National Doctors’ Day, but apparently it started 25 years ago, in 1991. As one of many SPM members whose life was saved (or is being helped) by excellent physicians, I’m in! And I want to shine a broader spotlight on the wider class called clinicians (Wikipedia): all sorts of medical professionals […]

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e-pts resources, general, hc's problem list, key people, Patient Conference Participation, patient networks, positive patterns, pts as teachers, shared decision making

Sep 26 – Patient Summit on Diagnosis in Alexandria, VA

To all in the Washington/Baltimore/northern Virginia area (and elsewhere if you care to travel!): The patient committee of the Society for Improved Diagnosis in Medicine would like to invite you to our second annual Patient Summit on Diagnosis. The summit is part of the pre-conference program of the Diagnostic Error in Medicine conference and takes place […]

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e-patient stories, e-pts resources, general, key people, patient networks, pt/doc co-care, pts as teachers

Guest post by Annette McKinnon: Power Equality: Why Is My Silo Two Miles Away?

This blog welcomes guest posts from SPM members on relevant topics. This is a blog post by Annette McKinnon, an e-patient in Canada. Annette is an enthusiastic advocate for patient inclusion in research and healthcare decision making. She has had rheumatoid arthritisfor the past 30 years, and has a background in market research. She attended […]

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news & gossip, patient networks, positive patterns, pt/doc co-care, reforming hc, Stanford Medicine X, trends & principles

Big BMJ supplement on Patient Centred Care – with many SPM and MedX voices

This is a great week for SPM, for our colleagues at the Stanford Medicine X conference, and for everyone else who’s been working for years to shift medicine’s thinking about the role of the patient: Yesterday the BMJ (formerly British Medical Journal) released a big, 21 article “Spotlight” supplement on “patient centred care.” The print edition is due out tomorrow, […]

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general, key people, patient networks, positive patterns

Inaugural Emerging Leader Award from CCFA- DC Chapter for Carly Medosch

Society for Participatory Medicine member Carly Medosch and her mother Mary Jo have run the Crohn’s and Colitis Foundation of America’s Fredericksburg, VA support group for the past 6 years. Crohn’s disease and ulcerative colitis are two forms of imflamatory bowel disease (IBD) – conditions with chronic or recurring immune response and inflammation of the […]

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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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e-pts resources, key people, patient networks, trends & principles

Communicating the experience of illness in the digital age

At 9am on Sunday, Sept. 7, 2014, Stanford Medicine X will host a discussion led by Pamela Ressler, Colleen Young, Meredith Gould and me about the power and pitfalls of people sharing their health experiences online. We are “flipping” the panel by sharing resources and participating in online discussions throughout the summer, hoping to include […]

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e-patient stories, e-pts resources, news & gossip, Patient Conference Participation, patient networks, positive patterns, practice variation, pt/doc co-care, pts as teachers, reforming hc, research issues, shared decision making

Patients Invited! Health Informatics Conference seeks Patient Participation

An international conference addressing information technology and communication in health (ITCH) will be held February 26 – March 1, 2015 in Victoria, British Columbia, Canada. Professor Stephen Hawking’s statement, “we learned to talk, we learned to listen, we unleashed imagination” provides the motivation for this year’s conference. The main conference themes are: Patients Talking The […]

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