Partnering with community members can strengthen the research process. Considering the lives and concerns of people impacted by programs and policies helps to bring experiential perspectives into the research process. Experiential perspectives add an equity-based approach to research and can help researchers and policymakers identify root causes and structural factors that result in some groups being disempowered or oppressed (Cerna et al., 2021; McIntosh & Wright, 2019). Experiential perspectives also help researchers develop deeper understandings of conditions impacting the communities they study, solutions most appropriate for those communities, and identify potentially harmful unintended consequences (Skelton-Wilson et al., 2021). This brief suggests strategies for including perspectives from lived experience at every stage of the research lifecycle, from design to dissemination of findings, and provides a list of additional resources.
- When deciding on which research questions to explore, ask,
- Why is this work necessary?
- Who does the work benefit?
- How does this work benefit the community at large?
- Who can the research process/findings harm? (Hawn Nelson et al., 2020); and
- Involve people with lived experience from the beginning of the research process, including when formulating research questions (Skelton-Wilson et al., 2021)
- Examine your own background, biases, and research motivations (Parkeh et al., 2020);
- Include collaborators from multiple backgrounds and cultures, including varied life experiences, races, genders, ethnicities, and socioeconomic classes (Andrews, 2020); and
- Budget time and resources for culturally responsive research practices such as dedicated funding for researchers to spend time in communities under study and funding to compensate community members for research participation (Andrews, 2020; Cerna et al., 2021; Skelton-Wilson et al., 2021).
- Consider how research design will affect community well-being; consider designing research focused on community assets rather than limitations (Cerna et al, 2021);
- Employ mixed-methods approaches such as adding qualitative components to better understand lived experiences (Ford & Goger, 2021; Hawn Nelson et al., 2020);
- Incorporate researching and understanding the history of local policies, systems, and structures into the research design (Hawn Nelson et al., 2020); and
- Include community members with lived experience on planning committees to inform decisions on data collection, ethical concerns relating to potential community impacts, analytical approach, and dissemination of findings (Hawn Nelson et al., 2020).
Data Collection & Analysis
- Use culturally relevant terminology in surveys and data collection tools (Baker et al., 2016; Cerna et al., 2021);
- Collect only data that is not available through existing data sets to avoid unnecessarily burdening the program or community under study (Balu, 2021);
- Disaggregate data when possible. Discuss risks and mitigation strategies with community members (Brown et al., 2021; Byon & Roberson, 2020; Hawn Nelson et al., 2020; Schwabish & Feng, 2021); and
- Seek multiple perspectives for data interpretation; engage domain experts (e.g., agency staff, community members) and methods experts (e.g., researchers and statisticians) to ensure analytical approaches are appropriate for the research questions in local contexts (Hawn Nelson et al., 2020).
Dissemination of Findings
- Include context about structural inequalities in the Abstract and Introduction to ensure findings are not taken out of context (Gross, 2020);
- Acknowledge within-group differences to avoid treating historically marginalized populations as a monolith (Gross, 2020);
- Credit community members and their contributions to the research (Harrison et al., 2021; Parekh et al., 2020); and
- Create alternative, accessible products for the community such as flyers, videos, or blogs (Cerna et al., 2021; Harrison et al., 2021; Hawn Nelson et al., 2020).
- Work with community partners to disseminate findings, consider diverse engagement strategies to help findings reach as many stakeholders as possible; and
- Make data publicly available for further research and use when possible.
Andrews, K. (2020). Embedding a Racial and Ethnic Equity Perspective in Research Proposals. Child Trends. https://www.childtrends.org/publications/embedding-a-racial-and-ethnic-equity-perspective-in-research-proposals
Baker, K. E., Durson, L.E., & Ridings, A. (2016). How to Collect Data About LGBT Communities. Center for American Progress. https://cdn.americanprogress.org/wp-content/uploads/2016/03/14092410/SOGIDataCollectionFactSheet.pdf
Balu, R. (2021). Approaches and Methods for Assessing and Remedying Barriers, Burden, and Inequities in Public Service Delivery and Access. MDRC. https://www.mdrc.org/sites/default/files/OMB_Response_Brief_Final.pdf
Brown, K. S., Ford, L., & Ashley, S. (2021). Ethics and Empathy in Using Imputation to Disaggregate Data for Racial Equity: Recommendations and Standards Guide (p. 32). Urban Institute. https://www.urban.org/sites/default/files/publication/104512/ethics-and-empathy-in-using-imputation-to-disaggregate-data-for-racial-equity_1.pdf
Byon, A., & Roberson, A. J. (2020). Everyone Deserves to be Seen: Recommendations for Improved Federal Data on Asian Americans and Pacific Islanders (AAPI). Higher Education Research Institute at UCLA. https://vtechworks.lib.vt.edu/handle/10919/100571
Cerna, O., Condliffe, B., & Wilson, A. (2021). Guiding Questions for Supporting Culturally Responsive Evaluation Practices and an Equity-Based Perspective. MDRC. https://www.mdrc.org/sites/default/files/Equity-Guiding_Questions.pdf
Ford, T., & Goger, A. (2021). The Value of Qualitative Data for Advancing Equity in Policy. Brookings Institute. https://www.brookings.edu/research/value-of-qualitative-data-for-advancing-equity-in-policy/
Gross, E. (2020). Equitable Research Communication Guidelines. Child Trends. https://www.childtrends.org/publications/equitable-research-communication-guidelines
Harrison, E., Mizota, M., Daly, H., Falkenburger, E. (2021). Community-Engaged Surveys: From Research Design to Analysis and Dissemination. Urban Institute. https://www.urban.org/sites/default/files/publication/104934/community-engaged-surveys-from-research-design-to-analysis-and-dissemination_0.pdf
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. https://www.aisp.upenn.edu/wp-content/uploads/2020/08/AISP-Toolkit_5.27.20.pdf
Mcintosh, I., & Wright, S. (2019). Exploring what the Notion of ‘Lived Experience’ Offers for Social Policy Analysis. Journal of Social Policy, 48(03), 449–467. https://doi.org/10.1017/S0047279418000570
Parekh, J., Andrews, K., & Peckoo, S. (2019). Five Guiding Principles for Integrating Racial and Ethnic Equity In Research. Child Trends. https://www.childtrends.org/publications/five-guiding-principles-for-integrating-racial-and-ethnic-equity-in-research
Schwabish, J., & Feng, A. (2021, March 22). Combining Racial Groups in Data Analysis Can Mask Important Differences in Communities. Urban Institute. https://www.urban.org/urban-wire/combining-racial-groups-data-analysis-can-mask-important-differences-communities
Skelton-Wilson, S., Sandoval-Lunn, M., Zhang, X., Stern, J., & Kendall, J. (2021). Methods and Emerging Strategies to Engage People with Lived Experience: Improving Federal Research, Policy, and Practice. Office of the Assistant Secretary for Planning and Evaluation U.S. Department of Health and Human Services. https://aspe.hhs.gov/sites/default/files/documents/1bb6cd68f81e1bb74e3bf30e1085a354/lived-experience-brief.pdf
Allen, E., Evans, C., Gangopadhyaya, A., Hernandez-Jennings, M., Jackson, D., Kenney, G., Shah, M., Taylor, K.J., & Wilkins, G. (2022). Centering Racial Equity and Community Voice to Improve Research Development, Execution, and Analysis [Webinar]. Urban Institute. https://www.urban.org/events/centering-racial-equity-and-community-voice-improve-research-development-execution-and-analysis
Office of Planning, Research, and Evaluation. (n.d.) Race Equity Research and Resources. Retrieved April 29, 2022, from https://www.acf.hhs.gov/opre/race-equity-research-and-resources
Randall, M., Stern, A., & Su, Y. (2021). Five Ethical Risks to Consider before Filling Missing Race and Ethnicity Data: Workshop Findings on the Ethics of Data Imputation and Related Methods (p. 14). Urban Institute.
Rodriguez, S.T., Kurup, R.S., Kimbrel, D., & Applegate, M. (2022). Systems Indicators for Equity [Webinar]. National Neighborhood Indicators Partnership. https://www.neighborhoodindicators.org/get-involved/webinars/system-indicators-equity
Rosen, R., & Welbeck, R. (2021). Equity Metrics, Measures, and Analytic Approaches in Education Research. MDRC. https://www.mdrc.org/sites/default/files/Equity-Metrics_Measures.pdf
Tammaro, A., & Shakesprere, J. (2020). Addressing Power Inequity in Research to Create Change. Urban Institute. https://www.urban.org/urban-wire/addressing-power-inequity-research-create-change