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 […]
health data
Acceptable uses of health data
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 […]
Patient-led research is a key element of pandemic response
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 […]
Advancing clinical registries to support pandemic treatment and response
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 […]
Accelerating real-time electronic data capture for COVID-19 tracking and response
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 […]
“For Black people, Minneapolis is a metaphor for our world.”
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 […]
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