Eileen Salinsky, Program Advisor, Grantmakers In Health
On the second day of our 2019 Fall Forum meeting, Translating Evidence Into Action: Data-Driven Approaches to Achieving Health Equity, GIH convened grantmakers to explore innovative ways to use data to advance health equity, promote community engagement, and drive policy change. Expert speakers and participating health funders contributed to a rich, wide ranging discussion of philanthropic strategies to both build a stronger evidence base and utilize that knowledge more effectively to achieve health equity goals.
Some health funders already support a variety of data collection and analytic activities that examine racial, ethnic, and other health inequities in order to inform their grantmaking, assess their impact, or facilitate advocacy efforts. Others are just entering this area or are interested in doing more. The following summary highlights actionable guidance for these efforts that emerged from the meeting’s proceedings.
Engage community members at every stage of research and evaluation efforts. Sometimes referred to as community-based participatory research, meaningful community engagement has the potential to strengthen research design, data collection, analysis, and dissemination activities. It is often overlooked, particularly in the earliest stages of a research effort, but to ensure alignment with community priorities community members should be actively involved in framing study questions. Members of communities of color and other historically marginalized groups have valuable experience and a deep understanding of their community context, offering compelling insights that can complement and guide researchers’ technical, methodological expertise. Input and participation from community members can improve the design of survey instruments, refine the selection of sample frames, identify novel research methods, and inform the interpretation of quantitative and qualitative data.
Be open to innovative data collection methods that promote community engagement. Community members can participate in data collection activities in ways that transcend traditional survey research and focus groups. For example, the Urban Institute is working collaboratively with community residents and government agencies in the District of Columbia to maintain the DC Preservation Catalog, a database of affordable housing. Community members are an integral part of the data gathering process, sharing their knowledge of housing that may be at risk and improving the accuracy of data derived from public sources. Innovative use of art as a data source also offers new ways to engage communities in research, while minimizing data collection burdens. Arts programs, such as Project Uncaged, allow people to share their experiences and values in a safe, culturally responsive environment. With the artists’ consent, researchers can then examine these artistic expressions using systematic methods to collect the types of data that might otherwise be gleaned through more traditional survey tools.
Disseminate the results of research and evaluation broadly and invite feedback on preliminary findings. In addition to improving the quality and accuracy of research findings, active community engagement also builds community power when people are given an opportunity to review and shape the evidence. Strategies used in the dissemination of the DC Health Equity report demonstrate how data can be used as a tool to influence the prevailing narrative, engage communities in policy decisions, and mobilize public will for policy change. The DC Department of Health worked to make the data easily accessible to city residents through thoughtful report design and innovative dissemination techniques, such as the use of QR codes to distribute data and solicit feedback. Community meetings held throughout the city increased awareness of the data, helped people understand the findings, and, perhaps most importantly, invited input from residents on their reactions, perspectives, and ideas. These investments in intensive community engagement set the stage for interagency collaboration to address the challenges identified in the report using a Health in All Policies approach.
Recognize that meaningful community engagement requires commitment, flexibility, and dedicated funding. Engaging communities and responding to their input requires a significant investment of time, energy, and leadership from both researchers and the communities being asked to participate. Health funders should require prospective grantees to plan for these activities and must ensure that adequate financial resources are available to support these efforts. When done correctly, community engagement is likely to result in changes in study focus and methodological approach. Funders need to be flexible and receptive to change as research projects evolve in response to community input.
Support researchers who come from communities of color and build a pipeline for developing young talent. In identifying experts to lead research and evaluation efforts, funders should strive to work with research partners who live within or come from the communities being studied. When seeking to identify diverse research talent, funders may need to look beyond traditional networks, focusing on rural universities, historically black colleges and universities, tribal colleges, and Hispanic-serving institutions. Additional investments are also needed to expand the diversity of the research workforce for the future. Funders can support and leverage capacity building efforts, such as Equal Measure’s New Connections program funded by the Robert Wood Johnson Foundation, which provides research grants, networking opportunities, and skill building to scholars from backgrounds that are historically disadvantaged or underrepresented in research disciplines.
Invest in policies and practices that yield disaggregated data on distinct groups within major racial and ethnic categories. The broad racial and ethnic categories used in most data collection efforts mask important differences within these groups and obscure the variability in experiences of more discrete populations. For example, aggregated data for Asian Americans and Pacific Islanders fail to show the diversity in socioeconomic and health outcomes for subgroups based on ethnicity, national origin, or language spoken. Aggregated data also obfuscate the experiences of smaller populations, such as American Indians and Alaska Natives, rendering them completely invisible in many datasets. A report by PolicyLink, funded by the Robert Wood Johnson Foundation, analyzes challenges in data disaggregation and recommends changes and improvements to research methodologies and to government and corporate policies that define priorities and allocate resources.
Utilize a positive, asset-based approach to analyze health equity issues. Too often attempts to document health disparities are framed in a negative way, focusing solely on problems or gaps. The Health Opportunity and Equity (HOPE) Initiative provides a new approach to measuring national and state level progress toward expanding opportunity across all racial, ethnic, and socioeconomic groups. The initiative tracks twenty-eight, positively-framed indicators that span the life course, including health outcomes and indicators related to socioeconomic factors, the physical and social environment, and access to health care. For each measure, benchmarks establish aspirational but achievable goals based on populations and states that have already obtained the best outcomes. The HOPE initiative is seeking to better understand the policy environments behind equity success stories and to lift up these policy strategies in order to inspire action in other jurisdictions.
Understand that a strong evidence base is necessary, but not sufficient, to advance equity-promoting policies. Data alone, no matter how compelling, are unlikely to change the status quo. Research and evaluation must be paired with investments in relationship building, leadership development, and advocacy to disrupt the existing power dynamic. For example, the Foundation for a Healthy St. Petersburg has leveraged a series of health equity research reports, including An Equity Profile of Pinellas County, to advance concrete policy changes related to local support for more equitable public transportation. Data on segregation in housing, locations of zero-car households, and employment locations informed actions by the county commission. However, investments in building long standing, trusting relationships with local public officials ensured this evidence would be viewed as credible and influential to the policy making process.
Integrate an equity frame in routine data collection, analytic, and decisionmaking activities. The guidance described above is broadly relevant to all foundation initiatives and practices and should not be limited to efforts explicitly focused on equity objectives. Health funders seeking to establish a culture of accountability regarding health equity should critique their own data collection and analytic practices embedded in grant application, selection, reporting, and evaluation processes. The Equity Footprint, developed by Frontline Solutions, is a tool that helps funders assess the extent to which they engage in equitable practices regarding organizational culture, grantmaking, investments, leadership and governance, operations, communications, and evaluation and learning.
Health funders have an important and ongoing role to play in developing a more robust, impactful evidence base to advance health equity. The health equity movement has progressed significantly from the early days of solely documenting racial and ethnic disparities in health status. However, a continued focus on monitoring health outcomes and testing interventions is needed to ensure accountability and sustain momentum moving forward.