patient networks

 

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, general, news & gossip, others' e-patient stories, 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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found on the net, patient networks, positive patterns, pt/doc co-care, shared decision making

From BMJ: The interdependent roles of patients, families and professionals in cystic fibrosis

Our Member Beth Nash MD recommends this article: This is an incredible article in BMJ Quality & Safety about how patients, families and professionals can (and need to) work together to improve care (in this case, the care of cystic fibrosis patients). Here’s a link to the PDF of the article: http://qualitysafety.bmj.com/content/23/Suppl_1/i90.full.pdf+html Here’s a link […]

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e-pts resources, patient networks

Rare Diseases: Powered by Patients

A guest post by Wendy White of Siren Interactive in honor of Rare Disease Day: Can empowered patients drive change in healthcare? Take a look at the progress that has been made in the rare disease community over the last 30 years—much of it spearheaded by patients and caregivers–and I think you’ll agree that the answer is definitely, […]

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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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hc's problem list, patient networks, policy issues, pts as teachers, reforming hc, shared decision making, trends & principles

e-Patient Manifesto: “Patients Included”

In 1517, Martin Luther nailed his “Ninety-Five Theses” to the wooden doors of Wittenberg Cathedral, sparking a global reformation of the Christian faith that’s still going on today. In the 1950s and 1960s Dr. Martin Luther King Jr. worked to drive inclusion for all in a society that had long separated people of different backgrounds. […]

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patient networks, positive patterns, pts as teachers

Summit on Identifying Family Caregivers on Medical Records – by Suzanne Mintz

Below is a guest post by Suzanne Mintz, founder Family Caregiver Advocacy about a summit where patients and caregivers were an integral part of the healthcare redesign process. More and more you will see us featuring meetings and conferences that include patients and asking others to include patients and caregivers. Suzanne is a social entrepreneur, family caregiver […]

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e-patient stories, e-pts resources, 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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