Working Toward Community Engagement in Research: Collaborative Outreach to Minority Populations
Outreach Partnership Program 2005 Annual Meeting
Saturday April 2, 2005
Renata Henry, M.Ed., Director
Division of Substance Abuse and Mental Health, State of Delaware
Dr. Nakamura introduced Renata Henry as one of the most active members of the NIMH National Advisory Council, and she described herself as wearing three hats for this presentation: Council member, director of mental health and substance abuse services in the State of Delaware, and member of a minority group. She thanked the Outreach Partners for their valuable contributions to the work of NIMH.
Her presentation covered the importance of minority recruitment and diversity at NIMH, focusing on clinical research, staffing, and training; the collaborative model of outreach to minority communities; and the role that Outreach Partners can play as part of that model.
Minority participation in clinical trials is basically good science, because the sample needs to reflect the population. Good science is the essential underpinning of the public health approach to mental health and mental illness. The prevalence of mental disorders in minority populations is similar to that for whites, but the evidence suggests that there is a difference in treatment and intervention effects. It is imperative that we establish the efficacy of guidelines or other evidence-based interventions for ethnic and racial minorities. When disseminating information about treatment outcomes, it is important to realize that minority communities want to know that the research on which the information is based applies to diverse populations. Eventually, we hope that science will determine the efficacy of culturally-specific interventions for minority populations and their effectiveness in clinical practice.
NIH as a whole understands the importance of minority recruitment and diversity. In 1993, Congress mandated that women and minorities must be included in all clinical research studies, that trials must be designed to permit valid analysis of differences in intervention effects, and that NIH must initiate programs and support for outreach efforts to recruit women and minority groups into clinical studies.
Diversity is good business practice: it enriches learning, enriches health care systems, and is needed to reduce health disparities. Racial and ethnic minorities experience a greater disability burden from mental illness than do whites, due largely to disparities in access to quality health care. In addition, the presence of more minority group investigators would encourage more racial and ethnic minority individuals to participate in research, which in turn would mean that the research results would apply to the broader population.
NIMH has been working for years to improve minority staffing, training and recruitment into clinical studies. In January 2005, NIMH convened a meeting of Council representatives to help accomplish these goals by developing new strategies and recommendations that encourage change in policies, procedures and processes, and the implementation of best practices. For example, it was recommended that NIMH staff members intervene much earlier in the process if a researcher is having problems meeting the goals for minority recruitment. It was suggested that NIMH establish a mentoring program whereby up-and-coming African American and Latino researchers would be mentored by experienced minority researchers and helped to apply for an NIMH research grant.
Ms. Henry described the concept of collaborative outreach in minority communities and how Outreach Partners can get involved in this kind of outreach. A “best practice” of collaborative outreach in minority communities has its foundation in the principles of community-based participatory research. These principles entail regarding community members as partners, not just subjects; involving the community being studied in the research; connecting the community members directly with how the research is done and what comes out of it; and involving community members in promoting the use of the research findings.
Outreach Partners are already engaged in the process of creating partnerships to improve mental health. As evidenced in the poster sessions on the previous day, Outreach Partners are disseminating results of research and educating minority and ethnic communities to increase awareness of interventions that help to relieve the burden of mental illness. All of this helps to improve the lives of people in the community, but Ms. Henry challenged the Partners to participate in the “front end” of the process, by doing more to recruit minority and ethnic populations into clinical trials and engage them in the research process.
In addition to clinical trials recruitment, by involving minority communities in research and demonstrating its value to them, Outreach Partners may also be able to help increase the number of people of color in health professions and research. An important element in collaborative outreach, particularly in working with major research universities and academic institutions, is resource sharing and treatment of minority communities as equal partners. Ms. Henry acknowledged that involving minority community members in the research process means combating a history and legacy of mistrust about the government. This is not unjustified: think of Tuskegee, confiscation of Native lands and relegation of Native Americans to reservations, or internment camps for Japanese Americans during World War II. Minority communities have been disappointed when research institutions have not continued contact with study participants after a project has been completed. Overcoming mistrust requires a long and careful process of community engagement.
What is community engagement? It involves five elements: (1) building community relationships that are based upon trust and respect within and across the community, a process that takes time; (2) investing beyond the current project and building a sustained relationship; (3) using multiple approaches and activities, involving religious leaders, schools and other institutions and individuals in the community; (4) acknowledging and using existing community structures and key organizations; and (5) having the willingness and ability to learn from the people in a community.
Ms. Henry ended with a list of resources that are useful for understanding the model of community-based participatory research and how it can apply to outreach programs.
Questions and Answers
The Tennessee Outreach Partner said that several minority groups had requested help with developing an outreach program targeting Somali, Iraqi and Kurdish populations, based on MHA of Middle Tennessee’s successful Hispanic outreach program. SAMHSA awarded a grant to the program, but then said that the Iraqi and Kurdish populations did not qualify as minorities. Ms. Henry deferred to the Federal representatives. Ms. Magee (National Library of Medicine) said that while the Federal Government recognizes four minority, historically underserved sectors (African American, American Indian, Hispanic and Asian American), she advised using Census data to prove need in Tennessee.
Ms. Moore (CMHS/SAMHSA) suggested that she consult with the Outreach Partner to explore alternative funding that SAMHSA might be able to support.
Disclaimer
* This document is intended to summarize a speaker presentation at the NIMH Outreach Partnership Program’s Annual Meeting and is not an official statement or opinion of the NIMH. This information is in the public domain and may be used or reproduced for educational purposes without additional permission from the NIMH.
