Researching racial equity: The value of centering lived experience in the research process

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Anthony Barrows
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In J-PAL North America’s researching racial equity blog series, we discuss how research plays a critical role in identifying structural inequities in systems and policies that disproportionately affect communities of color.  In part four, we sit down with Anthony Barrows, Managing Partner and Founder of the Center for Behavioral Design and Social Justice, to understand how to center lived experiences throughout the research process and in impact evaluations.

Defining lived experience and what it means to center this experience

Lived experience refers to individuals’ first-hand experiences with a program, policy, or problem. This could include people who are delivering a program (e.g. social workers) or people who are receiving a program (e.g. foster parents). Centering lived experience means creating space for people to share their expertise and for that expertise to be valued and incorporated into decision-making. This is especially important for people receiving an intervention since they often have the least opportunity to share their knowledge, concerns, and experiences with researchers. 

People with relevant lived experience are often not intentionally included in the research and policymaking process. Researchers may feel that including lived experience goes against the “objective” and data-driven approach that they strive to take, or that having direct experience with a program or policy somehow discounts the objectivity of that experience. However, centering people with lived experience throughout the research process can improve the relevance of research and the ability of research to affect meaningful change. 

Centering lived experience helps researchers ask better questions and design better interventions

People with lived experience bring knowledge that is often invisible to those outside communities where interventions take place, yet this knowledge is essential for designing effective programs and evaluations. When designing interventions with the New York City Housing Authority (NYCHA), ideas42 listened to NYCHA residents and key stakeholders to understand their concerns about improper disposal of waste on NYCHA grounds. But the engagement didn’t stop with these initial conversations. A member of the project team, and former NYCHA resident, was able to share first-hand knowledge of how residents refer to their housing developments that people unfamiliar with public housing were unaware of. By using this language rather than the formal names used by NYCHA administrators the team was able to build trust among NYCHA residents and increase NYCHA resident engagement with the new intervention. 

Centering lived experience can make research more ethical 

To respect the autonomy and dignity of human participants in research, they must be included in the research process. Power imbalances and researchers' lack of familiarity with study contexts are barriers to fully realizing these ethical principles. By centering lived experiences, researchers can mitigate power imbalances and ensure that participants are respected, benefitting from participation, and treated fairly. Salma Mousa, a researcher in the J-PAL network, demonstrates how centering lived experience can make research more ethical in her study that tests the impact of contact across religious lines on social cohesion in post-ISIS Iraq. In Mousa’s study, the research team and soccer league staff were displaced Christians with ties to the local community. Having a study team whose lived experience matched that of participants minimized power imbalances and created open lines of communication between the community and researchers. Staff contributed to decisions on recruitment, inclusion and exclusion criteria, and treatment intensity (the number of Muslim players added to Christian teams) to ensure that participants would feel safe and their perspectives were respected.

Practical guidance for researchers interested in centering lived experience in their own research

The following strategies should be adopted before a research question is developed and are intended to create an environment to involve communities in the research process, from establishing the research question to communicating and implementing results: 

  • Define who people with lived experience are in the context of your work. 
  • Recruit research partners with lived experience to support the research process and make sure they are in an environment where they can succeed. This includes creating space where partners with lived experience can share their direct experiences without having their objectivity or the value of their contributions questioned. 
  • Actively engage people with lived experience throughout the research process, and address reasons why communities of color, particularly Black, Latino/a/e, and Indigenous communities, distrust the research process. Pre-work is needed to build and rebuild trust in communities. There is no shortcut to this process. It takes time and it is worth the investment. Your research plan should account for this extra time and: (1) consider the representativeness of who shows up, (2) involve outreach to include people who may not show up as readily, and (3) account for heterogeneity within racial and ethnic groups.
  • Be mindful that the people most willing to share their experiences may not be fully representative of the population of interest, and that those who are not showing up have valuable experiences to share. Being purposeful about soliciting a wide range of experiences can help ensure representation across demographics (e.g. gender, race) as well as qualitative experiences (e.g. people who hate the program, people who love the program).
  • Invest money by seeking out funding and paying people with lived experience for their time and expertise. The funding environment isn’t designed to cover these expenses over the time period that is needed, so ongoing conversations between the research community and the funding community are needed. Through explaining the importance of including those with lived experience in the research process, we can work towards creating new funding norms. As an example, the Office of Equity in Washington State developed interim guidelines and best practices for compensating individuals with lived expertise. 
  • Share ownership. This means not helicoptering into a community, asking for help, and then helicoptering out with the results. True collaboration could include everything from shared development of research questions to opportunities for data ownership and co-authorship.
     

Selected resources for further reading:

Arnstein, Sherry R. "A ladder of citizen participation." Journal of the American Institute of planners 35.4 (1969): 216-224.

Chicago Beyond. “Why am I always being researched? [Guidebook].” (2019). 

This resource examines the unequal power distribution in research studies and provides guidance for how researchers, community partners, and funders can engage in more balanced research practices that promote shared decision making to strengthen research practices.

 

Hawn Nelson, A., Jenkins, D., Zanti, S., Katz, M., Berkowitz, E., et al. (2020). A Toolkit for Centering Racial Equity Throughout Data Integration. Actionable Intelligence for Social Policy. University of Pennsylvania.

This resource outlines how data can be collected, used, analyzed, and shared to benefit communities and avoid harmful practices that promote bias. 

 

NCAI Policy Research Center and MSU Center for Native Health Partnerships. (2012). ‘Walk softly and listen carefully’: Building research relationships with tribal communities. Washington, DC, and Bozeman, MT: Authors.

This resource was produced in collaboration with tribal leaders and those involved in tribal research and focuses on how to build effective partnerships with Native communities. 

 

J-PAL also has a series of research resources that provide researchers and research staff with information and guidance for:

The researching racial equity blog series features the contributions of researchers and partners in examining and addressing racial inequities and offers resources and tools for further learning. Part one shares an example of evaluating racial discrimination in employment. Part two features work quantifying housing discrimination. Part three gives an overview of stratification economics in the context of evaluations. Part five shares guidance for incorporating inclusive and asset-based framing throughout the research cycle. Part six examines sources of bias in administrative data bias. Lastly, in part seven, Damon Jones and J-PAL staff share progress on researching racial equity and future areas of work.

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