Jul 16th 2019, 5 tweets, 6 min read Read on Twitter
"Hospitals, Some Members Congress Concerned About Patients Making Uninformed Decision To Share Medical Data W/3rd Party Apps” Ironic since every day hospitals send patient data to 3rd parties w/no idea what is happening to it. @politico @ChrisMurphyCT @rosadelauro @SenBlumenthal
mentions The bottom line is that patients should be informed where their data goes - & should have clear, easily understandable explanations. Most often now they do not even know who has their data. Important because it could contain info that they consider highly personal and sensitive.
mentions And public health and certain research exceptions might exist for the use of deidentified data…but society needs to come together and be clear what is acceptable. The default should be the patient’s preference - with explicit permission.
mentions That patients may squander their health data or put it at risk is legit concern, just as it is for their money. So we have laws to protect people who may seek to bilk them of their financial resources. We do not say that they cannot control their money. We have laws to help them.
mentions From @politico article: "Epic Systems founder Judy Faulkner told POLITICO ... that she worries data flowing from EHRs into such apps could get into the wrong hands.” What a paternalistic impulse. And ironic given the ways data holders traffic data. politico.com/story/2019/07/… @S4PM
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