One of the main goals set forth by the Building Trust project was to create training and educational programs designed to increase the participation of minorities in public health research by empowering them to become informed decision makers, and to strengthen the capacity of researchers and community members to work effectively with each other.
Our team has developed three unique education programs designed to achieve this goal. Enhancing Minority Engagement in Research is a facilitator-led program designed to enable minority community members to engage with health and medical research and to make informed decisions about participating in research. Becoming a Self-Reflective Researcher: Successfully Engaging Minority Communities is also facilitator-led, and is designed to strengthen the capacity of researchers, health professionals and IRB members to effectively recruit and retain minority participants in researchers. Building Trust between Minority and Researchers Online is a web-based, interactive adaptation of Enhancing Minority Engagement in Research, and can serve as a resource for both community members and researchers with their community partners. Clink on a title above, or scroll down to learn more about each of these programs.
This curriculum is designed for use in minority communities, particularly those who experience significant health disparities. This program will help 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. Ideally, two facilitators will lead this interactive, five-module program in groups of 10-20 participants. Potential audiences include community advisory boards, civic groups, faith communities, YMCAs/YWCAs, tribal groups, and other interested in learning more about participating in research.
Some of the unique features of this program are: 1) it is not tailored to any specific disease, condition, or research project. It is designed to be general in nature, and thus applicable across a wide range of audiences; 2) participants learn how to read and evaluate health news stories; 3) participants learn how make their own informed choices about whether to participate in research rather than just being encouraged to participate; and 4) attendees learn ways to become involved with research and researchers other than participating in a study.
This curriculum is designed for use by researchers, research staff, IRB members, and health professionals to strengthen their capacity to effectively recruit and retain minority participants in research. Through seven interactive modules, participants will respond to trigger films, discuss complex ethical issues, and practice skills for enhancing recruitment, retention, informed consent, and the development of community partnerships. This facilitator-led program can be used in settings such as academic health centers, health sciences schools, research centers, and government agencies.
Unique features of this program include: 1) a formative exploration of how past research abuses contribute to a legacy of mistrust today; 2) tools useful for opening the dialogue about sensitive topics such as race, racism and discrimination; 3) information on how and why to build community relationships; 4) an extensive look at how to reform the informed consent process into a conversation rather than just a requirement; 5) identifying and practicing the skills and knowledge required to effectively recruit and retain minorities in research. Additionally, one module of the program is dedicated to analyzing ethically complex research cases to explore how missteps, exploitations, and abuse can occur even when all protocols and guidelines are followed.
Building Trust between Minorities and Researchers Online: An Interactive Web-Based Educational Program
This online resource is designed for use by community members, for researchers and their community partners, by educators as part of a course curriculum, and by health professionals and students. Throughout the three unit program, users receive information about health disparities and the fundamentals of health research, how to make an informed decision about participating in a research study, and ways to become involved with research or researchers. The program includes unique interactive exercises, provocative video clips, stimulating discussion questions, a searchable multimedia resource center, and useful downloads to make the site engaging as well as informative. It is designed for use by individuals or for groups exploring the issues together.
The Building Trust Online program is freely accessible to everyone. To visit the site, click the map below or go to http://www.buildingtrustumd.org