The Data Liberation Project — Long COVID Questionnaire Responses

This request is a collaboration with Betsy Ladyzhets of MuckRock’s Documenting COVID-19 project.

National Institutes of Health’s RECOVER Initiative is a congressionally-funded research project “to understand how people recover from a COVID infection, and why some people do not fully recover and develop Long COVID or PASC (post-acute sequelae of SARS-CoV-2).”

One of the initiative’s core components is its “Adult Study Protocol,” which aims to enroll more than 17,000 people over the course of four years and which involves the use of an extensive “Adult Survey Question Library.” This spreadsheet contains a list of those questions, which cover Long COVID symptoms, COVID treatment history, vaccine status, comorbidities, demographic information, and more.

Our FOIA request 📄 seeks all database records collected through that questionnaire, plus all relevant database documentation. Disclosing these records to the public, rather than only to a select group of researchers, could greatly improve public understanding about Long COVID / PASC. It could also help shed light on the progress of the RECOVER Initiative, for which Congress has allocated $1.15 billion in funding.

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Updates

Appeal Filed • On November 13, 2023, we submitted an appeal 📄 to HHS regarding this case. The appeal has been assigned tracking number 2024-00037-A-PHS.
Request Denied • On September 8, 2023, the NIH emailed a letter denying access to the requested records 📄, “pursuant to Exemptions 3 and 6 of the FOIA, 5 U.S.C. § 552(b)(3) and (b)(6) and sections 5.65 and 5.67 of the HHS FOIA Regulations, 45 C.F.R. Part 5.” The Exemption 3 argument cites “42 USC 241(f), which exempts certain biomedical information from disclosure if it is ‘about an individual and that is gathered or used during the course of biomedical research if, (A) an individual is identified; or (B) there is at least a very small risk, as determined by current scientific practices or statistical methods, that some combination of the information, the request, and other available data sources could be used to deduce the identity of an individual.’“ The NIH did not indicate which aspects of the records would pose this risk, or how. Regarding our request for documentation, the NIH pointed to a data dictionary available online.
Request Acknowledged, Fee Waiver Not Yet Determined • On December 1, 2022, NHLBI emailed a letter 📄 acknowledging our request and noting, “Because we are uncertain that any applicable fees will exceed our minimum charge ($25.00), we are not addressing your request for a fee waiver at this time.”