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Susannah Fox

I help people navigate health and technology.

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health data

Patient-led research is a key element of pandemic response

August 14, 2020 By Susannah Fox 11 Comments

Puzzle with missing pieces

On August 12, the Council of Medical Specialty Societies hosted the fifth webinar in their series focused on COVID-19 and clinical registries. If you missed it — or want to watch it again — here’s the video: Here, also, are the panelists’ slides and a collection of tweets posted in advance of and during the […]

Filed Under: health data, participatory research, patient networks, peer-to-peer health care, research issues Tagged With: Body Politic, Council of Medical Specialty Societies, COVID19, Emily Sirotich, Gary Wolf, Gina Assaf, Hannah Davis, Helen Burstin, LongCovid, patient registries, Quantified Self, rheumatoid arthritis

Advancing clinical registries to support pandemic treatment and response

July 27, 2020 By Susannah Fox 23 Comments

Close up of fuzzy dandelion seeds

The biomedical research model has a blind spot. People living with a condition or disease are traditionally seen as passive sources of data, not active participants in the research. We as a society miss out on promising avenues of inquiry. It’s time to widen our lens. On August 12, I’ll moderate a discussion about how […]

Filed Under: health data, peer-to-peer health care Tagged With: Body Politic, British Medical Journal, Council of Medical Specialty Societies, COVID19, Emily Sirotich, flip teaching, Gary Wolf, Gina Assaf, Hannah Davis, Helen Burstin, LongCovid, patient registries, Quantified Self, rheumatoid arthritis

Accelerating real-time electronic data capture for COVID-19 tracking and response

July 13, 2020 By Susannah Fox 1 Comment

UC Health line graph showing COVID19 cases across their hospital system in July 2020

The Council of Medical Specialty Societies and the Association of Academic Medical Colleges, with support from the Gordon & Betty Moore Foundation, are hosting a webinar series focused on COVID-19 patient registries. They are being offered free and open to the public. The second in the series took place on July 8 and addressed the […]

Filed Under: health data Tagged With: Andrew Ip, Atul Butte, Body Politic, Council of Medical Specialty Societies, COVID19, Jessie Tenenbaum, North Carolina, patient registries, Subha Madhavan, Tellen Bennett

“For Black people, Minneapolis is a metaphor for our world.”

June 1, 2020 By Susannah Fox 2 Comments

Pictures of black men, women, and children who were killed by police in Minneapolis since the year 2000.

The following is an excerpt from the Data for Black Lives Statement of Solidarity with Black Minnesotans, by Yeshimabeit Milner (@YESHICAN). I’m posting it as a way to amplify her voice. Please click through to read the entire essay. If you share it on social platforms, please share her Medium post directly. We at Data […]

Filed Under: health data, key people, policy issues Tagged With: Black Lives Matter

Leveraging data-driven patient participation to accelerate medical research

May 18, 2020 By Susannah Fox 9 Comments

A person holds a sign "I did not get the memo that this was impossible" as 1s and 0s race beneath him

Here’s a lesson I learn over and over again: Never assume knowledge. Don’t waste your time making a point if you are not sure your audience understands the context for it. Or, as the wise Andy Kohut used to say, “If they don’t get the premise, they won’t get the joke.” Last year I spoke […]

Filed Under: health data, medical records, research issues Tagged With: All of Us, Andy Kohut, Christine Bechtel, FasterCures, Milken Institute, patientslikeme, Rachel Tunis, Regina Holliday, Tidepool, Todd Park, War on Cancer

Tracking the trackers

May 13, 2020 By Susannah Fox 25 Comments

In Dark Times Shine Your Light Brighter

UPDATE: On August 12, I’ll moderate a discussion about prioritizing patient engagement and inclusion of patient-generated COVID-19 data in clinical registries. It is being offered free and open to the public. Read a preview post and register here for the webinar. Every day I see a new example of a survey or other tool to […]

Filed Under: health data, participatory research, patient networks, peer-to-peer health care, research issues Tagged With: 23andme, Ancestry, Body Politic, COVID19, cystic fibrosis, Health Data, Open Humans Foundation, patient registries, patientslikeme, Webmd

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