HRA Guide to Collecting Demographic Data

• Guide to Collecting Demographic Data (members-only download, PDF)
• Guide to Collecting Demographic Data (members-only download; screenreader-accessible PDF)

Collecting demographic data consistently, accurately, and respectfully allows funders to monitor the diversity of their applicants, awardees, and reviewers, and assess ways in which their processes and practices may be creating barriers or inequities for certain demographic groups. This guide, developed as part of the Health Research Alliance Inclusive Grantmaking Initiative, is intended to facilitate collection of demographic data in ways that comply with current legal and regulatory requirements by providing sample data use statements and sample questionnaire language.

The guide has been reviewed by outside legal counsel for use specifically in evaluating applications for grants and awarding grants to applicants. These guidelines do not constitute legal advice. They are not to be used in any way with respect to employment or equivalent arrangements.

What is in the guide?

1. Data Use Statements: Demographic data collection surveys should include a data use statement that informs respondents why information is being collected, who will have access, and how it will be used and disclosed.  This section contains sample data use statements for hypothetical data use cases.
2. Questionnaire Language: This section contains sample questionnaire language for gender identity, sexual orientation, disability status, race and ethnicity, and socioeconomic status. Sample phrasing draws from publicly available exemplar practice guides, and when possible, adheres to recommendations put forth by organizations representing identity groups about which data is being collected.
3. Appendices: Appendix 1 contains demographic questions used by the National Institutes of Health. Appendix 2 contains outside counsel insight about the Supreme Court’s decision in the Students for Fair Admissions, Inc. v. President and Fellows of Harvard College case and elements of the decision that may be relevant to demographic data collection in contexts other than the college admissions process.

Who can use the guide?

As of November 2023, the guide is available to HRA members. HRA members are encouraged to provide feedback and suggestions for edits for future versions of the guide via the feedback form: https://www.surveymonkey.com/r/8JSP7PZ. HRA member feedback will be used to revise the guide, which will be made publicly available in January 2024.