The Delphi Research Group at Carnegie Mellon University (CMU), in partnership with Facebook, has conducted the COVID Symptom Survey to better understand the spread of COVID-19 and its effects on public health and well-being. This may help improve our local and national responses to the pandemic and our understanding of how it has affected society.
De-identified individual survey responses can be made available to researchers associated with universities or non-profit organizations who sign a Data Use Agreement (DUA). To request access to the data please submit the information requested in Facebook’s page on obtaining data access, which sets out the basic conditions and provides a form to request access. An international version of the COVID Symptom Survey is conducted by the University of Maryland (UMD) and access can be requested through the same form.
The United States survey protocol has been reviewed by the Carnegie Mellon University Institutional Review Board with IRB ID STUDY2020_00000162.
Some important notes about obtaining access to the individual survey responses:
- Your research purpose must be consistent with the consent language used in Wave 1 of the survey, which states the responses may be used to create “a better public health understanding of where the coronavirus pandemic is moving, to improve our local and national responses.” While the consent language changed in Wave 4 to allow more uses, we are not currently able to adjust the DUAs to support different use cases.
- Part- or full-time employees of Facebook are not eligible to receive data access, since Delphi’s agreement with Facebook to protect the privacy of respondents prohibits Facebook employees from receiving any microdata.
- Because this survey is large and many groups have access, the Data Use Agreements are not negotiable.
After you complete the request form, staff from Facebook and CMU will be in contact to guide you through the rest of the process. They will provide data use agreements for your institution to sign, and will also request a copy of your Institutional Review Board approval to verify you have ethical approval to conduct the research.
After the DUAs are executed, we will ask you to fill out this form to set up your microdata access. This form can be used for new research projects or adding new researchers to existing projects.
After completing these forms, credentials for SFTP will be emailed to each individual on the team. Please do not share your credentials with other users. Only one person per research team needs to fill out this survey. You can list all relevant team members in one submission. For teams with more than 5 members, please fill out an additional form(s) to cover your whole team.
If you have questions about the process, or your IRB needs information about the survey for their review, contact us at firstname.lastname@example.org.