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Susannah Fox

I help people navigate health and technology.

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health data

“Privacy leaves the room when cancer enters.”

July 3, 2012 By Susannah Fox 1 Comment

– John Wilbanks talking about unintended consequences of informed consent. Read a summary of his talk and a clarification.

Filed Under: ethics, health data, policy issues, research issues Tagged With: John Wilbanks

What’s the future for self-tracking?

March 9, 2012 By Susannah Fox 38 Comments

Stephen Wolfram’s essay, The Personal Analytics of My Life, begins: “One day I’m sure everyone will routinely collect all sorts of data about themselves.” A Pew Internet survey suggests we have a long way to go: a September 2010 survey found that 27% of internet users age 18+ track their own health data online. There […]

Filed Under: health data, research issues, trends & principles Tagged With: Analytics, Brigid Schulte, Health Data, Internet Survey, Matthew Cornell, Pew Internet, Quantified Self, Stephen Wolfram, tracking

An ode to health data rights

April 8, 2011 By Susannah Fox 10 Comments

Fun for Friday: David Hale singing an ode inspired by Regina Holliday and e-Patient Dave:

Filed Under: health data, medical records Tagged With: David Hale, E-Patient Dave, Regina Holliday

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

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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Recent Comments

  • Susannah Fox on Public Q&A: “I received scary test results. What questions should I ask my clinician?”: “Thanks, Samantha! I love your signature line/bona fides list — you tick the boxes for “learned and loved experience” described…” May 6, 15:33
  • Samantha Bridge on Public Q&A: “I received scary test results. What questions should I ask my clinician?”: “Great conversation. It has been my experience as a nurse to have the conversation before the testing. What is the…” May 4, 09:05
  • Susannah Fox on Rare Disease in the NYT: “Captivated is such a good description of how I felt, too. I read the essay once through quickly, then a…” Apr 25, 11:12

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