Collecting and Understanding Demographic Data to Advance Equity, Diversity, and Inclusion

Brian C. Quinn and Priya Gandhi

The Robert Wood Johnson Foundation’s Approach

The Robert Wood Johnson Foundation (RWJF) is committed to building a Culture of Health that provides everyone in America a fair and just opportunity for health and well-being. Achieving this goal requires valuing and focusing on equity, diversity, and inclusion.

To that end, as described in our Guiding Principles and Equity, Diversity, and Inclusion Commitment, we are committed to fostering diverse perspectives and inclusive environments. We recognize that individuals’ perspectives are shaped by a host of factors, including their demographic identities and other personal and professional experiences. As an organization, we believe it is crucial that our discussions and actions are evidence-based and reflect an understanding of those individual factors that shape diverse perspectives. This desire was a driving force behind our efforts to develop and launch a comprehensive survey effort to collect demographic data from ourselves and those with whom we work.

Earlier this year, we launched this pilot survey internally with RWJF employees and Board of Trustee members and externally with the leadership of newly awarded grants and program contracts. We worked closely with the Center for Effective Philanthropy (CEP) to design and administer the survey.

While various organizations have historically collected demographic data, a scan of the field suggests that there is no one-size-fits-all approach across the philanthropic and nonprofit sectors. We are sharing our approach here with the hope of sparking additional conversations among our collaborators and peers, and of encouraging more transparency from other funders in our sector.

Our Principles

We benefited tremendously from peers and other nonprofit organizations who shared with us their approaches, considerations, and lessons learned from their own experiences. Their insights helped us develop five principles that informed our approach.

Principle 1: Survey respondents, whether internal or external to our organization, must be asked to report on the same set of demographic measures. We feel strongly that we cannot expect leadership of grants and program contracts to answer questions that we are not asking of ourselves.

Principle 2: Survey respondents must only be asked to report demographic data for themselves. Although we are interested in better understanding the demographic profiles of our grantees’ and program contractors’ organizations, we recognized that many of these organizations differed greatly in their approaches to demographic data collection, and in their capacity to collect this data if an approach does not exist. We decided to ask respondents only to self-report, so as to not contribute to unintentional actions that negatively impact diversity and inclusion efforts.

Principle 3: Inclusivity of all identities is key across all demographic measures. Many existing reporting standards reflect overly narrow perspectives on diversity. For example, the binary response option of woman or man excludes other gender identities present in the U.S. population. Further, individuals may identify at differing levels of granularity for a specific demographic measure. For instance, an individual who broadly identifies as “Asian or Asian American” may prefer the more granular identity of “South Asian.”

Principle 4: Transparency is important, but sharing demographic data should be an anonymous, confidential, and voluntary process. Given the protected nature of certain demographic measures and lack of a standardized approach to demographic data collection, use, and dissemination, it is encouraged that such surveys be anonymous, confidential, and voluntary to protect survey respondents and ensure they are comfortable engaging in these efforts. We also believe that this demographic data in aggregate, once collected, must be shared transparently and publicly.

Principle 5: The storage and use of collected demographic data and any related dissemination efforts must be disclosed prior to surveying respondents. Respondents must be provided clarity about how their demographic data will be stored, used (particularly whether and how it might be leveraged in decision-making processes), and shared (both internally and externally). A third-party organization with survey expertise can help ensure these policies are adequately upheld.

Our Approach

We collaborated with CEP to launch our demographics survey in early 2020. Given the above principles, we believed it was necessary to work with a third-party organization that could field the survey on our behalf and store and help analyze the data. CEP has had a longstanding history as a trusted partner in the nonprofit sector, and their deep expertise in collecting data related to organizational performance and other sensitive topics contributed immensely to our efforts.

Our survey inquires about respondents’ identities across the following demographic measures: 1) range of year of birth; 2) gender identity; 3) transgender identity; 4) race and ethnicity; 5) person of color identity; 6) sexual identity; and 7) disability status. While we recognize that there are multiple demographic measures not captured in this list, we felt it important to inquire about a set of measures most salient to our work while minimizing response burden.

Aspects of the survey protocol demonstrate how the above principles were operationalized through our approach:

  • The same survey was fielded through CEP’s online platform with three unique respondent groups: RWJF employees, RWJF Board of Trustee members, and project director(s) or principal investigator(s) of newly awarded grants and program contracts. RWJF employees and Board of Trustee members received the survey in early 2020, while the project director(s) and principal investigator(s) receive the survey at the beginning of the month after their funding is established.
  • The introductory section in the survey protocol describes CEP’s confidentiality policy as well as the policies related to demographic data use and dissemination.
  • The survey is voluntary for all respondents. Respondents have the option to not participate in any aspect of the survey, to skip specific survey questions, and to select the response option of “prefer not to respond” for each survey question.
  • CEP synthesized current literature and other resources to develop definitions for each response option. These sources and definitions are shared as part of the survey, which assists respondents in selecting the identity that best represents themselves and helps foster a more comprehensive understanding of the breadth and diversity of individuals’ identities.
  • To maximize inclusiveness, the survey also offers an option for respondents to “check all that apply” for the gender identity, race and ethnicity, and sexual identity questions. These questions additionally include an option to select “different identity” and enter an identity in a text box.

Further, given the pilot nature of our demographic data collection approach in 2020, an optional question was included at the end of the survey to collect anonymous feedback and suggestions from respondents. We will analyze these open-ended responses to best determine how the survey protocol may be refined and possibly expanded in the future.

Reflections

We are excited to share that we had a 77 percent response rate among RWJF employees and a 93 percent response rate among RWJF Board of Trustee members. Their aggregate demographics are now available on RWJF’s website. The data collection with leadership of grants and program contracts is underway, and we will share their aggregate demographics publicly in early 2021.

Thus far, we have received positive feedback regarding the nature of this survey effort, as well as suggestions for how we might expand the set of demographic measures in future years. The demographics survey has been successful in providing a baseline understanding of, and sparking important discussions related to, the perspectives that are currently included in our work — and the ones that must be elevated further. As we continue to work toward equity, diversity, and inclusion, we expect to collect demographic data on an annual basis.

We have been heartened already to see our peer funders and other nonprofit organizations leverage our survey protocol to begin collecting demographic data themselves. Our hope is to continue collaborating with others to help develop standardized and comprehensive practices for collecting and using demographic data to advance equity, diversity, and inclusion in the nonprofit sector. We welcome your ideas.

Brian C. Quinn, PhD, is the associate vice president of Research-Evaluation-Learning at the Robert Wood Johnson Foundation, where he leads a team dedicated to understanding and measuring key health and healthcare issues as well as the Foundation’s strategies and organizational performance. Follow him on Twitter at @quinnhealth.

Priya Gandhi, MS, is a former research associate in the Research-Evaluation-Learning unit at the Robert Wood Johnson Foundation, and is currently pursuing a doctoral program at the Pardee RAND Graduate School, within the RAND Corporation.

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