e-patient stories


e-patient stories, end of life, ethics, key people, others' e-patient stories, patient networks, pts as teachers, social media

e-Patient Lisa Adams

In this guest blog post, member Carly Medosch describes Lisa Adams whom she knows from social media. Lisa Adams was diagnosed with stage 4 breast cancer and documented her journey in social media. In another post below we describe the media firestorm that was caused by two articles that criticized her efforts. A hashtag was […]

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e-patient stories, general, Why PM

My Reasons for Thanksgiving: On The Ultimate Loss of Control, Unclear Diagnoses, and Being a Patient

As we know participatory medicine is based upon mutual respect: the clinician respecting the self-knowledge, experience, and wisdom that the patient brings to the collaboration and the patient respecting the knowledge, clinical experience, wisdom, and technical skills that the clinician brings. While most patients won’t be able to experience what it’s like to be a clinician, […]

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e-patient stories, key people, others' e-patient stories, patient networks, pts as teachers, social media

Regina Holliday: The Walking Gallery film

Regina Holliday and her Walking Gallery project are featured in a new short film. Here it is: The Walking Gallery of Healthcare from Eidolon Films on Vimeo. How a movement begins…

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e-patient stories, general, pt/doc co-care, reforming hc, shared decision making

Author Anna Quindlen asks medical schools: do you really know your patients?

Any of us would probably have paid to be at the gathering of over 1000 medical school deans, faculty and residents at last week’s American Association of Medical College’s (AAMC) meeting to hear Anna Quindlen deliver her speech, Healthcare in an Age of Information: How Doctors, Nurses and Consumers Can Make One Another Better.  [Her […]

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e-patient stories, e-pts resources, JoPM, patient networks, positive patterns, social media

Join #s4pm tweetchat Saturday 10/12 at 3pm ET

We’re organizing a tweetchat this Saturday – October 12 at 3 PM ET to welcome MedX partcipants into the Society for Participatory Medicine. We will discuss our communications tools, and other topics of interset to our members: e-patients, health care social media, and patient-centered design. Come meet the friends you made at MedX and share […]

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e-patient stories, general, hc's problem list, policy issues

Screw HIPAA: Here’s a Look at My Doctor’s Office

A few months ago, I complained about the layout of one of my doctor’s offices. There’s a rough layout drawing of the office waiting area to the side there. I’m standing just in front of the number 1, while people are sitting along the wall behind me. Do you see the problem? After I identify […]

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e-patient stories, medical records, patient networks, positive patterns, pt/doc co-care, trends & principles

Erin Moore’s speech: What if CF had a Collaborative Care Network?

SPM member Erin Moore (@EKeeleyMoore) is one heck of an activist parent. She sees the future, she has a stake in it – a kid with a chronic disease – and like many of us, she’s not waiting around for someone else to make it happen: she’s engaged in creating the future that her son […]

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e-patient stories, e-pts resources, others' e-patient stories, pts as teachers

Rheumatoid Arthritis Ruined Her Elbow, But Nothing Could Break Her Hope

SPM member Kelly Young is one of the most spectacular, potent, world-changing e-patients I’ve ever seen. (See our many posts here about her activism.) Aside from all her work on RAWarrior.com and her Foundation, see how she uses this case to teach. Peer-to-peer healthcare: NOTE: Did you or someone you know participate in a clinical […]

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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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e-patient stories, key people, patient networks, positive patterns, pt/doc co-care, Why PM

A parent speaks: “Our child’s disease is OUR disease”

Susannah: On June 14, 2013, I attended the National Meeting on Promoting and Sustaining Collaborative Networks in Pediatrics where we discussed topics covered in a special issue of Pediatrics, among other initiatives and trends. Justin Vandergrift was one of the speakers and his words were so compelling that I asked if we could publish them […]

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