e-patient stories

 

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 […]

Read More
e-patient stories, e-pts resources, general, net-friendly docs, positive patterns, pts as teachers

Regina Holliday’s whooping cough story in PharmaTimes: “Treat us as partners”

-+*SPM member/legend Regina Holliday, a powerful force for grass roots empowerment and creator of The Walking Gallery of Healthcare, got whooping cough (pertussis) this winter, despite having been vaccinated just a few years earlier. The UK magazine Pharma Times interviewed her for their inside-back-cover feature in the current issue. She details how she took advantage […]

Read More
e-patient stories

Count the e-patient takeaways: “What I learned going down an emergency slide”

-+*Susannah Fox, long one of our most popular and prolific bloggers, is roaming to wider audiences these days. She’s entrepreneur-in-residence at Robert Wood Johnson, she has her own site, and she’s just started writing on the hip-hip site Medium.com. We’ve long said that there’s nothing unique about being an engaged, empowered patient (e-patient): it’s a […]

Read More
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 […]

Read More
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 […]

Read More
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 […]

Read More
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 […]

Read More
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 […]

Read More
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 […]

Read More
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 […]

Read More