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Jessie Gruman: Poetry in Motion

This essay was written by Sarah Greene, co-founder of the Journal of Participatory Medicine and currently Founder/CEO of RapidScience.org.  “That the powerful play goes on, and you may contribute a verse.” – Walt Whitman, ‘O Me, O Life’ We New Yorkers have been...

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...

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...

Mobile, social, health, care

A clinical trial in Kenya confirmed that human kindness is the secret ingredient to health and mobile phones are an ideal delivery system. Well, that’s my interpretation. Here’s the gist: Taking your meds is essential to maintaining your health when you...

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...

Caregivers: a celebration

Becoming a caregiver seems to change people as health information consumers. They turn up the volume on every information source. They track down information as if it is a competitive sport.* They don’t let pay walls or office hours stand in their way....
Caregivers, please share your stories

Caregivers, please share your stories

The Pew Research Center will release a new report about caregivers in June. As we prepare, I’m looking for stories to share with reporters so they can better understand the context for our data. If you have experience caring for a family member, a friend, or a...

Mother’s Day

We have posted many stories featuring mothers over the years. In celebration of Mother’s Day, a compilation: A Lifetime of Participatory Medicine Can Start With Maternity Care Through the Land of Smoke and Mirrors: An e-Patient’s Odyssey (“Mama Lion”...
How do (older, lower-income) patients learn?

How do (older, lower-income) patients learn?

Rebecka Sexton of the Center For Innovation at the Carilion Clinic in Roanoke, VA, emailed a great question and I’d like to share it more widely: We are working on a project here at Carilion on chronic diseases related to Population Health Management related to...

Anniversary of a health data earthquake

Four years ago this week, e-Patient Dave published, “Imagine someone had been managing your data, and then you looked,” and forever changed the national conversation about health data. I have described that post as an earthquake — a surprise to those...

Rare Disease Day 2013: Help Spread Awareness

A guest post by Wendy White, Founder & President of Siren Interactive Each year Rare Disease Day is celebrated worldwide on the last day of February. This year is even more special because it’s the 30th anniversary of the Orphan Drug Act, which provides incentives...

What if health care…?

For over a year I’ve been the accidental manager of a community garden. All I did — I swear — is point out an open plot of land and people started pitching in, planting, asking friends to join them. All of a sudden we’d transformed a bare patch...

Health Online 2013: survey data as vital sign

Survey data is a snapshot of a population, a moment captured in numbers, like vital signs: height, weight, temperature, blood pressure, etc. People build trend lines and watch for changes, shifting strategies as they make educated guesses about what’s going on....

Top 5 Posts of 2012

I was curious to see which were the top 5 posts, traffic-wise, and figured readers might be interested, too. Here’s the line-up: #1: Open knowledge saves lives. Oppose H.R. 3699! by Gilles Frydman The e-patients.net post with the highest number of views is a...

The Waiting Room

Check out the documentary film, The Waiting Room, set in the emergency department of Highland Hospital in Oakland, CA. I wrote a post about a screening and discussion in DC last night and I’m hoping to get a report from tonight’s Cambridge, MA, event. If...

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