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Susannah Fox

I help people navigate health and technology.

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policy issues

Peer support for when the system fails

January 7, 2019 By Susannah Fox 23 Comments

Painting of three figures wearing hospital gowns, each of whom is on a different mountaintop, reaching for each other

What do you do when you know something is wrong but you can’t find anyone to confirm your suspicions? Or when you finally identify the culprit but find out that other people are being kept in the dark? These days it’s likely that you go online and if you are lucky — or determined — […]

Filed Under: patient networks, peer-to-peer health care, policy issues Tagged With: Facebook, medical devices, peer-to-peer healthcare

Data as an engine of disruption in health care

October 22, 2018 By Susannah Fox 32 Comments

Medical records closes at 5pm on Friday by Regina Holliday

Continuing my practice of “flipping” an event — posting what I hope to get across in advance in order to jump start the conversation — here is a preview for a panel set to take place on Oct. 23. My co-panelists (Iya Khalil, Deborah Kilpatrick, and Don Rucker) and I will talk about data as an engine […]

Filed Under: health data, medical records, policy issues Tagged With: Anil Sethi, Blue Button, Deborah Kilpatrick, Deven McGraw, Don Rucker, EHR, electronic medical record, FasterCures, flip teaching, Harlan Krumholz, Hugo Campos, Iya Khalil, Lisa Bari, Lucia Savage, Milken Institute, Open Notes

Blue Button’s North Star

August 23, 2018 By Susannah Fox Leave a Comment

Red Stop sign with stickers, so it reads: DON'T STOP BELIEVING

Blue Button is a Trojan horse for culture change in the American health care system. It places power in the hands of patients and whets the data appetites of millions of Americans and the companies who would like to serve them. If you’ve never heard of Blue Button, here’s a quick overview: The federal government […]

Filed Under: health data, medical records, policy issues, positive patterns Tagged With: Blue Button, FHIR, Hhs, Mark Scrimshire, Markle Foundation, Medicare, VA, veterans, White House

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

Flashback: Announcing the Invent Health Initiative

March 8, 2018 By Susannah Fox 2 Comments

Make Things, above a drawing of a woman holding tools

I recently signed on as an advisor to a group of George Washington University students who are organizing a medical and assistive device hackathon on March 24-25, 2018, in downtown DC. Check it out if you live nearby! In pulling together resources for them, I found the memo I sent to senior leaders across the Department […]

Filed Under: key people, policy issues Tagged With: assistive devices, Hhs, home health care hacks, Invent Health, NIH

Unrest

January 8, 2018 By Susannah Fox 1 Comment

Jennifer Brea, director of the film Unrest, lies in bed with EEG leads on her head

The film “Unrest” will debut on Independent Lens this week (check your local listings — in the DC area it will air on Jan. 12 at 10:30pm on WETA). I couldn’t wait and bought my own digital copy on Amazon. Let me just say: It’s no surprise that it’s on the short list for an Academy […]

Filed Under: e-patient stories, key people, patient networks, peer-to-peer health care, policy issues Tagged With: chronic fatigue syndrome, Jennifer Brea, Marfan syndrome, ME/CFS, myalgic encephalomyelitis, peer-to-peer healthcare, Rare Disease, rare diseases

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