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Susannah Fox

I help people navigate health and technology.

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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

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Recent Comments

  • Dave deBronkart on Caregiver Survival Guide: “As I age and see my lifelong peers start to decline, this brings tears to my eyes. Thank you again.…” Oct 22, 10:17
  • Susannah Fox on Patient Input on Clinical Trials: “Great question, thank you! My impression is that our best bet is to make it appeal to study sponsors as…” Oct 17, 10:26
  • Dave deBronkart on Patient Input on Clinical Trials: “I don’t have anything to add but I have a suggestion for the problem that trialists don’t *know* about the…” Oct 16, 14:01

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