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Susannah Fox

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patientslikeme

Patient Communities: Which Way Forward?–Susannah Fox

August 9, 2010 By Susannah Fox 12 Comments

If you were designing a disease treatment system from scratch, bringing together clinicians, patients, researchers, and advocates, what platform would you use to take advantage of the community created by this umbrella group? This isn’t just some health geek SimCity exercise. I was actually asked that question recently, by people who have lined up the […]

Filed Under: patient networks Tagged With: ACOR, cancer, Decision Tree, health 2.0, imedo, iWantGreatCare, paginemediche.it, Paris, participatory medicine, patientslikeme, Pew Internet, The Moment

Patient Communities… at Walgreens?

June 17, 2010 By Susannah Fox 30 Comments

Aisle of a Walgreens drug store

UPDATE: On Feb. 18, 2015, PatientsLikeMe and Walgreens announced a partnership: “Now, anyone researching a medication or filling a prescription on Walgreens.com can access a simple snapshot that shows how their prescribed medication has impacted other patients on the therapy, including medication side effects, as reported by PatientsLikeMe members.” One more step away from “crazy” and toward “obvious” […]

Filed Under: e-pts resources, patient networks Tagged With: American Well, CureTogether, Diabetic Connect, Diana Forsythe, E-Patient Dave, Google Health, Inspire, MedHelp, Microsoft HealthVault, patientslikeme, Rite Aid, Ted Eytan, Walgreens

A New Conversation About Health Privacy: Who’s In?

May 21, 2010 By Susannah Fox 29 Comments

Light bulbs in the night sky - a photo by Ted Eytan

Facebook has sparked a new debate about privacy and I think it’s time to bring it to health care. What does it mean when millions of people flock to share/overshare information, even as Facebook’s default privacy settings have slowly become openness settings (but the company maintains radio silence)? Pew Internet research shows that a sizeable […]

Filed Under: health data, patient networks, policy issues Tagged With: Facebook, Hipaa, patientslikeme, Pew Internet, privacy

The Decision Tree: How Better Health Can Scale

May 1, 2010 By Susannah Fox 3 Comments

“The internet was created to connect people and groups. The first step is to share stories. The next step is to share quantitative observations.” “Health care has been locked up in regulatory amber. HIPAA was passed in 1996, almost perfectly timed to cut off health care from the internet. But there is a loophole: to […]

Filed Under: health data, patient networks, policy issues, positive patterns Tagged With: 23andme, chronic disease, CureTogether, Decision Tree, digital divide, Genetics, getupandmove, Health Data, Hipaa, patientslikeme, Pew Research Center, susannah fox, Thomas Goetz

Health 2.0 Europe: A Moveable Feast–Susannah Fox

April 19, 2010 By Susannah Fox 13 Comments

Ernest Hemingway wrote that Paris is a moveable feast, not fixed in time or place. I think that describes great gatherings of any kind, including great conferences, which begin before the first speaker takes the stage and don’t end simply because the participants have left the building. Health 2.0 Europe began, for me, in February, […]

Filed Under: demographics, trends & principles Tagged With: ACOR, california healthcare foundation, cancer, Chronic Conditions, chronic disease, diabetes, health 2.0, Heart Conditions, High Blood Pressure, Internet Users, Lung Conditions, participatory medicine, patientslikeme, pew internet project, Pew Research Center, Sharing Strength, Social Impact Of The Internet

Privacy can kill, openness can heal–Susannah Fox

February 11, 2010 By Susannah Fox 34 Comments

If you follow Jeff Jarvis on Twitter or read his blog, you know (maybe more than you wanted to) about his fight against prostate cancer. I’ve mostly paid attention to what he’s written about technology and journalism, but check out this excerpt from his post, The German privacy paradox: I prefer to turn the question […]

Filed Under: patient networks Tagged With: ACOR, health 2.0, patientslikeme, privacy

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