e-patient stories

 

e-patient stories, found on the net, positive patterns, reforming hc

Health Affairs – Narrative Matters: Suzanne Mintz’s article about caring for caregivers

Our member Suzanne Mintz, a Family Caregiver Advocate, shares the link to her Narrative Matters article/podcast in the current issue of Health Affairs: The Double Helix: When The System Fails The Intertwined Needs Of Caregiver And Patient www.healthaffairs.org/narrative-matters/ The policy recommendations for improving care for families living with multiple chronic conditions include: Document primary family […]

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e-patient stories, medical records

Request: true stories of where patient engagement in the chart made a difference

I’m giving a talk in Vermont next week, to health IT workers, and in talking with the organizers we realized it would be great to give them a vision of WHY we’re doing this – some true stories of where patients benefitted from seeing the data in their chart. (By the way, the event is […]

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

American Heart Association journal announces new Patient Viewpoints

The American Heart Association journal Circulation: Cardiovascular Quality and Outcomes has announced a new Patient or Caregiver Viewpoint section in the journal. Viewpoints will be authored by patients or their caregivers and will discuss the patient’s experience of heart disease, stroke, or other cardiovascular disease and their interactions with the healthcare system. As Harlan Krumholz […]

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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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e-patient stories, e-pts resources, key people, positive patterns

Uri Goren TedxHIT video: Patients are Not Empty Carriages

Uri Goren is the General Manager of e-Pochonderiac a blog about healthcare and digital technology and also a digital health consultancy and agency working in Israel to support digital health in the local health and pharmaceutical industry and to promote the roll of the patient in the healthcare ecosystem. This venture has begun from a […]

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e-patient stories, e-pts resources, found on the net, policy issues

Times science reporter asks: “Ever hit a paywall?”

Thanks to Twitter friend @CourageSings for this tip. I retweeted it, but I know a lot of readers of this blog will answer “yes” and might not see the tweet: Ever hit a paywall trying to access a scientific paper? For a story, would love examples from non-scientists. Plz email me amy@nytimes.com — Amy Harmon […]

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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, 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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