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Susannah Fox

I help people navigate health and technology.

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participatory research

The Rise of the New Bio-citizen

March 11, 2018 By Susannah Fox 4 Comments

Over the next two days, I’ll be part of a group convened by Eleonore Pauwels and Todd Kuiken to discuss barriers to citizen-driven biomedical research. If you are intrigued, read the report, “The Rise of the New Bio-citizen,” which lays out how people “are pursuing a range of activities from analyses of genomic data for […]

Filed Under: participatory research, peer-to-peer health care, policy issues, research issues Tagged With: Anna McCollister-Slipp, Eleonore Pauwels, Invent Health, Matt Might, patient activation, peer-to-peer healthcare, Rare Disease, Todd Kuiken, Tracking for Health

Access to results that matter

October 26, 2017 By Susannah Fox 16 Comments

Painting of people climbing cell structures

The Patient-Centered Outcomes Research Institute (PCORI) will kick off their annual meeting on Tuesday, October 31. I will moderate the first panel, “Access to Results That Matter,” and, as I like to do, I’m starting the conversation early online. Here’s the session description: Traditional health research often does not provide the answers to patients’ questions […]

Filed Under: health data, participatory research, policy issues, research issues Tagged With: Ben Goldacre, Bishop Simon Gordon, David Lansky, Diane Padden, flip teaching, Freddie White-Johnson, PCORI, Regina Holliday, Sharon Terry, Stephanie Buxhoeveden

“His doctors were stumped. Then he took over.”

February 5, 2017 By Susannah Fox Leave a Comment

New York Times Sunday Business story on Feb. 5, 2017: Doctor, Cure Thyself

How might we empower people to participate in research about their own diseases or conditions? Which models work best for organizations solving medical mysteries or improving care for those living with rare conditions? These are two of the questions raised by a New York Times story today: “His doctors were stumped. Then he took over,” by Katie Thomas […]

Filed Under: hc's problem list, key people, participatory research, patient networks, peer-to-peer health care Tagged With: C3N Project, patientslikeme, peer-to-peer healthcare, Rare Disease, Smart Patients

Quantified Self Public Health

May 12, 2015 By Susannah Fox 11 Comments

Quantified Self Public Health is back! 150+ health geeks of many stripes will gather on Thursday, May 14, in San Diego to discuss how access to personal data could benefit individuals and society. It is an invite-only meeting (sorry!) but filled with voracious documentarians like Joyce Lee (read her Storify from last year) and, well, me (read […]

Filed Under: key people, participatory research, research issues Tagged With: Don Norman, home health care hacks, Ian Eslick, maker movement, public service, QSPH, Quantified Self

How did we get here? And where are we going?

July 15, 2014 By Susannah Fox 17 Comments

The Vasa, which sank on its maiden voyage in 1628

Video of my talk in Sweden is now online (skip to minute 7 unless you speak Swedish): It’s a comprehensive summary of my research so far, as well as an argument for listening to patients and caregivers as we move forward into the future. I opened with an example that was inspired by a visit […]

Filed Under: participatory research, patient networks, peer-to-peer health care, trends & principles Tagged With: C3N Project, cystic fibrosis, patientslikeme, peer-to-peer healthcare, Pew Internet, Pew Research Center, scurvy, Sweden, video

Quantified Self Public Health Symposium

April 6, 2014 By Susannah Fox 13 Comments

Health Patch from Vital Connect

On April 3, I was part of  a symposium organized by Bryan Sivak, CTO, U.S. Department of Health and Human Services; Larry Smarr, Director, Calit2; and Gary Wolf, Director, Quantified Self Labs, where I presented the Pew Research Center’s findings on tracking for health. I uploaded my remarks in a separate post — this one is more of a “notes […]

Filed Under: key people, participatory research, pt/doc co-care, pts as teachers, research issues Tagged With: Gary Wolf, Pew Research Center, public service, QSPH, Quantified Self

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