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In the Wild: Data to Info to Action & Back & Again

Danny van Leeuwen Health Hats
18 min readFeb 21, 2022

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Data is not info is not action. Data, cooked into Info could lead to action. People add context, values, culture, experiences, history, biases to data and info.

Proem

Sometimes I feel absolutely disgusted with the hubris of academic research. How did we ever get to the place where we’re satisfied when we define high-value evidence from research that controls for most real-life factors (variables)? Supposedly good research controls for circumstances, settings, and populations until the research becomes so vanilla as to be meaningless to me and you. How can we expect people to use vanilla research to make decisions when it excludes people like them? Excludes women, people of color, the homeless, the incarcerated, those with rare diseases, and only includes able-bodied people or mostly people treated in academic medical centers? Research that barely knows how to use person-recorded data; can’t figure out how to track people’s decisions or the outcomes of those decisions over time; finds claims and medical records data to be the strongest data; can’t figure out how to correct medical record data errors. I get how complex this is, but where did we find so few resources to continually learn and get out of this rut? It’s just not good enough. I’m tired of the excuses: we don’t have interoperable data, sufficient standards, tested…

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Danny van Leeuwen Health Hats
Danny van Leeuwen Health Hats

Written by Danny van Leeuwen Health Hats

Empowering people traveling together toward best health. Pt with MS, care partner, nurse, informaticist, leader. Focusing on learning what works for people

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