Although health and medical research has been instrumental in improving the health of Americans, the underrepresentation of minorities in research has limited their ability to benefit equally from scientific advances.
Building Trust between Minorities and Researchers (BT) was a bioethics research initiative designed to address the underrepresentation of many minority groups in research as part of the federal recognition of the importance of fostering greater participation rates of racial and ethnic minority populations in research.
The goals of the project were to:
Increase the participation of African Americans, Hispanics, and other minority populations in public health and biomedical research, including clinical trials.
Strengthen the capacity of investigators, institutional review board members, and other research personnel to work effectively with minority communities.
Create a sustainable infrastructure of training and educational initiatives which can be evaluated over time to determine their impact on improving minority participation in research.
These goals were accomplished through the efforts of five specific aims which included both research (Aims 1-3) and educational components (Aims 4 and 5).
Specific Aim 1
Conduct an online survey to delineate the attitudes of researchers toward engagement with minority communities, barriers to recruitment and successful strategies.
Specific Aim 2
Conduct telephone interviews with a sample of researchers engaged with minority communities to determine best practices for recruitment and engagement.
Specific Aim 3
Identify the level of knowledge of research, research terminology, informed consent procedures, human subjects protections and trust through a telephone survey with a nationally representative sample of racial/ethnic minority adults.
Specific Aim 4
Develop and pilot test a comprehensive educational program for racial/ethnic minority community members on participation in research, including clinical trials.
Specific Aim 5
Conduct with the organization, Public Responsibility in Medicine and Research (PRIM&R), ongoing educational sessions (webinars, pre-conference workshops) focused on enhancing capacity to ethically engage minorities in the research process and building skills for community based research.
Building Trust Research
The research component encompassed three of the specific aims and consisted of three major research studies. These studies were designed to increase knowledge about minority participation in research, including clinical trials. The studies included:
- An online survey with researchers, research staff, IRB members, community members, and IRB staff,
- In-depth interviews with principal investigators to study best practices to include racial and ethnic minorities in research, and
- A national, random, digit dial telephone survey with African Americans and Hispanics/Latinos to understand knowledge and attitudes about health and medical research.
For more details about the Building Trust Research projects, click here.
Building Trust Educational Programs
The education component contained the remaining two aims and resulted in the development of two curricula, one geared towards community members, and one geared toward researchers, research staff, health profession students, and IRB members. The community curriculum, entitled Enhancing Minority Engagement in Research, is intended for use in minority or other underrepresented communities, particularly those who experience significant health disparities. This program helps participants understand how research can improve public health and eliminate health disparities. The goals of the program are to enable participants to engage with health and medical research in their communities and to make informed decisions about participating in research.
The second educational program included here is entitled: Becoming a Self-Reflective Researcher: Successfully Engaging Minority Communities. This curriculum is intended for use by researchers, research staff, health profession students, and IRB members, and is designed to strengthen the capacity of researchers to ethically engage with minority communities and to effectively recruit and retain minority participants in research.
We have also adapted select components from both curricula into a web-based, interactive platform, referred to as Building Trust Online.
For more information about our BT educational programs, click here.
Building Trust is our Future
Though the formal grant period of the project has ended, the M-CHE’s commitment to Building Trust remains. We continue to analyze our data and publish the results in peer-reviewed journals and present the findings at public health meetings and events.
Additionally, results from these research studies helped inform the content and development of our two facilitator-led Building Trust Educational Programs. These educational programs have been offered to a number of audiences across the country, and we continue to make plans to offer it in new venues. Additionally, we are pleased to offer an online adaptation of our curriculum, available at www.buildingtrustumd.org.
Finally, we continue to seek new funding opportunities to further explore ways to foster the development of trust and enduring relationships between minority communities and researchers to bring the best health to all Americans.