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 […]
health data
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 […]
Leveraging data-driven patient participation to accelerate medical research
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 […]
Tracking the trackers
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 […]
Public Q&A: Patient registries
A community colleague asked for advice about how an organization can boost the signal for their patient registry. Recruitment levels are not what they expected and nowhere near what they need. I’m sharing what I wrote back so that others can chime in with their advice in the comments. First, look at what successful registries […]
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