“The public does not know what safeguards HHS has put in place to protect their data and HHS has failed to share, among other items, what data goes into the system, how it can be used, or with whom it can be shared,” the letter states.
Katherine McKeogh, a spokeswoman with HHS, said in a statement that HHS Protect only uses information that has been de-identified.
The letter"urgently requests” specific information from the HHS about what personal health information the system will collect and how that data will be traceable back to individuals. It also asks how HHS Protect is working with private companies to collect data, what agencies have access to the data, and how long the personal data that is collected will be retained.
“Latino and immigrant communities have been decimated by the coronavirus pandemic, both disproportionately unemployed and also disproportionately essential workers on the front lines. We have the most to gain and lose from effective data practices that improve the COVID-19 federal response,” he added.
The representatives are also asking for basic details about which companies are involved in the creation and functioning of the platform and if people seeking health care will have the opportunity to opt out of having their health information included in the HHS Protect system.
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