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Susannah Fox

I help people navigate health and technology.

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Susannah Fox

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

Building an intake valve for new ideas

May 7, 2020 By Susannah Fox Leave a Comment

A woman building an device by hand

Imagine this: You and your colleagues know there are problems to be solved. You have resources to offer, such as funding, access to experts, and publicity. You are pretty sure there are people with great ideas out there, asking questions, defining the scope of the problems you care about, seeing things that you can’t see. […]

Filed Under: hc's problem list, key people, positive patterns Tagged With: George Hacks, Hhs, innovation, prize competitions, Robert Wood Johnson Foundation

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Recent Comments

  • Susannah Fox on Rare Disease in the NYT: “Liz, thank you for sharing this comment! I love your point about misinformation and sharing your expertise & resources as…” Jul 4, 12:05
  • Liz on Rare Disease in the NYT: “The author’s willingness to grapple with her competing instincts is admirable. As a former “medical mom,” I found the peer-connection…” Jul 1, 21:46
  • Carrie Kimmell on Case study: Trevor’s disease: “Hi Jill – currently Brandon is walking without a limp (he is almost 15 now). He was going to undergo…” Jun 5, 14:07

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