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Susannah Fox

I help people navigate health and technology.

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health data

The Data Puzzle of Our Time

February 16, 2021 By Susannah Fox 4 Comments

Gloved hands administering a shot to an arm

When the pandemic hit, we needed both grassroots and industrial-strength data platforms to effectively respond to the crisis. I have written about scrappy, patient-led data innovation. Today I want to share a broader view, thanks to a conversation I recently had with Tim Paydos, Vice President & General Manager of IBM Government. (I’m proud to disclose […]

Filed Under: health data, key people Tagged With: COVID19, IBM

What if we had people’s trust?

November 30, 2020 By Susannah Fox 8 Comments

Trust

I’d like to revive the spirit of the “What if health care…?” conversation, this time in the context of data and trust. What could we build with health data if we had people’s trust? How about: An algorithm to prevent suicide. An app to prevent addiction relapse. An app to help adolescents living with chronic […]

Filed Under: health data Tagged With: #whatifhc, addiction, adherence, Airbnb, FasterCures, Johnson & Johnson, Project HealthDesign, suicide prevention, Trustworthiness

Acceptable uses of health data

November 23, 2020 By Susannah Fox 4 Comments

Cat peering out from under a computer keyboard

My former colleagues at the Pew Research Center continue to publish the best research on the impact of the internet on American society, bar none. My fandom extends to creating a fact sheet summarizing their recent surveys about Americans’ data worries. The results are indications about what people think and feel about the shifting technology […]

Filed Under: health data Tagged With: FasterCures, fitness, Pew Internet, Pew Research Center, self-tracking, social media, Tracking for Health

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, patient registries, Subha Madhavan, Tellen Bennett

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Recent Comments

  • Kevin Lawrence on Caregiver starter pack: “We recently read The End-of-Life Handbook in our book club on Smart Patients. It’s aimed at caregivers rather than patients…” Feb 2, 09:41
  • Susannah Fox on Patient-led innovation: “Thank you! I’m very happy to know about your work and will add it to the list.” Feb 1, 09:19
  • Andrea Pauls Backman on Patient-led innovation: “Susannah, great list of patient-led organizations and programs, thank you. I would suggest adding a new, award-winning program co-produced by…” Feb 1, 08:58

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