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Susannah Fox

I help people navigate health and technology.

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Diana Forsythe

Books I read while writing Rebel Health

January 2, 2024 By Susannah Fox 2 Comments

Books stacked on a shelf

While writing my book, Rebel Health, I dove into the history of innovation and of the patient-led scientific revolution. I read the daring adventures of caregivers, survivors, and patients who pushed the edges of what is possible in medicine. I learned about clinicians’ and researchers’ perspectives on the changes happening in health care. And I […]

Filed Under: key people, research issues Tagged With: Abby Norman, Alondra Nelson, Amy Marcus, Chris Schroeder, Dana Lewis, Danny Sands, David Fajgenbaum, Diana Forsythe, E-Patient Dave, Elaine Schattner, Eric Topol, Eric von Hippel, Fiona Lowenstein, Howard Rheingold, James Fowler, Laurie Strongin, Meghan O'Rourke, MIT Press, Nicholas Christakis, Paul Batalden, Rebel Health, Ross Douthat, Ryan Prior, Sara Riggare, Siren Interactive, Sorrel King, Tom Ferguson, Victor Montori

Public Q&A: Human-centered design

January 9, 2023 By Susannah Fox 5 Comments

Questions marks painted on pavement

A community colleague recently tweeted an intriguing question: “Looking for a rec! Our grant team would like to have more knowledge & training around #HumanCenteredDesign for research & community engagement. Does anyone have #HCD trainings, modules, or programs they love?” She tagged a few people, including me, and a public conversation ensued. People shared resources, […]

Filed Under: positive patterns, public Q&A, research issues Tagged With: ARCHANGELS, Diana Forsythe, I AM ALS, IDEO, ImproveCareNow, Marina Nitze, Nick Sinai, Solve ME

Participatory research: it’s not everything, it’s the only thing

July 15, 2013 By Susannah Fox 5 Comments

Campo Volantin footbridge in Bilbao

One of my favorite structures in Bilbao is the Campo Volantin footbridge, designed by Santiago Calatrava. I went out of my way to walk over it many times while I was visiting that beautiful city. Approaching it was a visual treat and there were always musicians playing on it, an aural treat. But once you […]

Filed Under: beauty and wonder, participatory research Tagged With: Bilbao, Diana Forsythe, E-Patient Dave

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

“HIPAA is SO 1996″

September 25, 2009 By Susannah Fox 3 Comments

That’s a direct quote from Paul Tang, of the Palo Alto Medical Foundation, at last week’s meeting of the Health IT Policy committee, of which he is vice chair. Dr. Tang was riffing on an e-Patient Dave quote, which I read during my testimony: I want innovation at a rate that resembles the rate of […]

Filed Under: hc's problem list, medical records, policy issues Tagged With: Architectural Designs, Assumptions, Cell Phones, Debates, Decisions, Diana Forsythe, Hipaa, Infrastructure Design, innovation, Latanya Sweeney, Liquidity, National Infrastructure, Palo Alto Medical Foundation, Panelists, Patient Privacy, Paul Tang, Point Of View, Policy Committee, Policy Discussions, Testimony, Vice Chair

Cyberchondria: Old Wine in New Bottles

December 2, 2008 By Susannah Fox 6 Comments

Just before Thanksgiving, Microsoft released a study entitled, “Cyberchondria: Studies of the Escalation of Medical Concerns in Web Search.” Ryen White and Eric Horvitz took advantage of a data set that few people have access to (log files from Microsoft’s Live Search engine and MSN Health and Fitness) as well as a survey of 515 […]

Filed Under: news & gossip, understanding statistics Tagged With: artificial intelligence, cyberchondria, Diana Forsythe, microsoft, New York Times, search

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