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Susannah Fox

I help people navigate health and technology.

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Susannah Fox

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

Connecting during COVID-19

July 10, 2020 By Susannah Fox 7 Comments

Young woman holding smartphone with a person standing in the background

My friend and community colleague Margie Morris wrote a wonderful article for a clinical neuroscience journal that, with her permission, I am excerpting for a series of posts. My goal is to spark discussion about each of her insights. She writes: To meaningfully connect, we will need to do more than show up online. Now, […]

Filed Under: key people, social media Tagged With: COVID19, Margaret Morris

Signs of the times: Black Lives Matter

June 12, 2020 By Susannah Fox 3 Comments

Hand painted Black Lives Matter protest signs attached to fence

Sonja Sharp, an LA Times reporter, interviewed Deaf people about how they are creating and sharing new signs for this moment of reckoning and recognition. I cued up the story’s video (below) to the point at which Rorri Burton, a Black American Sign Language (ASL) interpreter, shares her perspective: The sign for “your knee on […]

Filed Under: key people Tagged With: Black Lives Matter, Deaf, Stanford Medicine X

“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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  • Susannah Fox on Lessons learned about hospice care: “Thank you for sharing!” Jul 30, 12:46
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