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Susannah Fox

I help people navigate health and technology.

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Susannah Fox

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

Participant-Entrepreneurs: Innovating Toward Better Health–Susannah Fox

May 13, 2010 By Susannah Fox 4 Comments

Nikolai Kirienko, Crohnology.MD Project Director, is setting a new standard for transparency in research and innovation as he blogs about his work with Project HealthDesign: On days where I could have benefited from the feedback of [Observations of Daily Living] the most, I was the least likely to be recording them. Why? On the worst […]

Filed Under: e-patient stories, key people Tagged With: Contagion Health, Crohnology.MD, CureTogether, diabetesmine, getupandmove.me, i'm too young for this, Project HealthDesign, Robert Wood Johnson Foundation, Transparency

Frequently Asked (But Unanswered) Questions About E-patients

May 11, 2010 By Susannah Fox 41 Comments

As I’ve written before, I love questions. It’s an honor to be handed someone’s nascent idea and to help them shape it (which is what I think a question really is). But this time I’m asking for YOUR input. These excellent questions were sent to me by Liav Hertsman and his colleagues at Tel Aviv […]

Filed Under: demographics, public Q&A, research issues Tagged With: authority, demographics, doctor ratings, drug reviews, Pew Internet, Reliability, Trustworthiness, UGC

The Power of Data and the Power of One

May 5, 2010 By Susannah Fox 13 Comments

I am struck, once again, by the power of data and the power of one. Carlos Rizo, Chief Imagineer of the Health Strategy Innovation Cell, posted this very intriguing tweet on May 2: The power of open data: To find problems in complicated environments, and possibly even to prevent them from emerging. Clicking through, I […]

Filed Under: policy issues, trends & principles Tagged With: Carlos Rizo, Gov 2.0, health 2.0, open data, Personal Democracy Forum, pew internet project, Regina Holliday, Ted Eytan

Health Geek Radio: Adam Bosworth’s Straight Talk Express

May 4, 2010 By Susannah Fox Leave a Comment

Adam Bosworth of Keas delivered quite a lecture yesterday at the Alliance for Healthcare Foundation. He talks about how Americans don’t really like data (but they need it), why “frugal innovation” is the best path for start-ups, how e-Patient Dave shook up the EHR world, why health privacy legislation would kill patient-driven research, and why […]

Filed Under: health data, medical records, policy issues Tagged With: Adam Bosworth, E-Patient Dave, EHR, Google Health, Health Data, Health Privacy, Keas

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

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