Fox: Personal health crises trigger immediate patient engagement with medical data
Susanna Fox · a16z Podcast | Dark Data in Healthcare · Jan 17, 2019 · at 3:43
Susanna Fox, former CTO of HHS, explains how medical crises force patient data engagement and shift cultural expectations around health data access.
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“But then when something happens, you're diagnosed with something, or your child or your mom is diagnosed with something, That will trigger engagement, let me tell you, and then people should have immediate access to the data and information that they need to make a decision, and that structurally hasn't been the case, and that actually, I think, is this moment that we're living through right now where there's changing expectations about what we should have access to, and so healthcare is rather slow in taking up this new culture of access, But I think it is changing, and I think it has to change.”
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More from Susanna Fox
Fox: Healthcare institutions operate believing they own patient clinical data
“We're in this position because most of healthcare has grown up believing that they own the data. So professionals generally collect and hold the clinical data that drives a lot of clinical care.”
Fox: Most people avoid confronting their personal medical data
“Most people don't want to engage in their health. Most people don't want to know what's going on. They're not necessarily ready to look into the mirror of data. I call it standing naked in front of the mirror of data.”
Fox: Patients with data access will form coalitions to demand clinical trials
“When patients all have access to their data, They could form a coalition and ask for a certain clinical trial.”
Fox: Researchers first detected the opioid crisis through death certificate data
“We started seeing signs of the opioid crisis in death certificates, and it was actually public health researchers who started looking at data and seeing, wow, that we're really seeing an uptick in this sort of death among young people.”