others’ 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, 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, 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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general, others' e-patient stories, 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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e-patient stories, key people, medical records, news & gossip, others' e-patient stories, PM Tech, policy issues

When is patient data not patient data? When a patient wants his or her ICD data

When is patient data not patient data? When a patient wants his or her ICD data

The latest news story to examine the issue of patient access to implantable cardiac defibrillator data (a variation on the theme of “gimme my damn data”) is an in-depth, Page One Wall Street Journal story featuring Society for Participatory Medicine members Amanda Hubbard and Hugo Campos. They have garnered attention in the past – one […]

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e-patient stories, found on the net, others' e-patient stories

A patient story: HIMSS’ Adam Bazer on IT from a patient’s perspective

From the HIMSS Blog, Adam Bazer with a personal health story where even in a great hospitals the IT is not as connected as can be. We wish your son Ari well, Adam! http://blog.himss.org/2012/06/25/healthcare-it-from-the-view-of-a-worried-father/ The link inside the post about another patient story with Jonathan Atler needs username/password for HIMSS virtual conference.

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e-patient stories, end of life, others' e-patient stories, pts as teachers

HIT Journalist becomes patient advocate after seeing the danger of uncoordinated care and poorly designed workflows

Neil Versel, a HIT journalist, relates a very touching story of his father’s care at two different hospitals: one was uncoordinated and prone to errors and near misses, another one was quite a good experience. Unfortunately Neil’s father had a rare poorly known disease (MSA) and he died from it. The whole story with details is here: http://www.meaningfulhitnews.com/2012/05/17/mark-versel-1944-2012/ […]

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found on the net, JoPM, others' e-patient stories, positive patterns, pts as teachers

Rheumatoid e-Patients Share the Spotlight at Medical Conferences

The Journal of Participatory Medicine has published a narrative by Kelly Young entitled “Present, Patient, and Accounted for: How and Why Patients Are Present at Scientific Meetings of the American College of Rheumatology.” Young describes how the Rheumatoid Patient Foundation evolved from her and other e-patients’ efforts to better understand their condition through online research […]

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JoPM, others' e-patient stories, positive patterns, pt/doc co-care, reforming hc

A physician who really understands patient-centered care

The Journal of Participatory Medicine has just published “The Patient Will See You Now,” a thought-provoking and rather moving narrative by John Krueger, MD. In telling his own story of becoming and maturing as a physician, the author persuasively argues that the key to practicing patient-centered medicine is devoting time to listen to patients’ stories […]

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e-pts resources, general, medical records, others' e-patient stories

Kenneth S. Spriggs: The Benefits Of Visualizing Your Medical Data

Guest blogger Ken Spriggs talks about how he made sense of his medical data by creating a graphic electronic health record, the DIYEHR. [Update 11/25: the data visualization that Ken created is so extraordinary that we're adding it here, four days after the original post. LOOK how he helped his physicians "get" his medical history! […]

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