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Building Trust between Minorities and Researchers

September 10, 2013
Contacts: 

Kelly Blake 301-405-9418

The University of Maryland's Maryland Center for Health Equity (M-CHE) has launched a new online educational program—Building Trust Between Minorities and Researchers—which seeks to close the gap in racial and ethnic health disparities. The program does so by providing culturally tailored information and skills to minority communities on how to become an informed decision maker for participation in research, including clinical trials. COLLEGE PARK, Md. – The University of Maryland's Maryland Center for Health Equity (M-CHE) has launched a new online educational program—Building Trust Between Minorities and Researchers—which seeks to close the gap in racial and ethnic health disparities. The program does so by providing culturally tailored information and skills to minority communities on how to become an informed decision maker for participation in research, including clinical trials.

"We live in a time of great advances in medical science and public health…yet, unfortunately far too many racial and ethnic minority Americans live sicker and die younger than white Americans," says Dr. Sandra C. Quinn, senior associate director of the M-CHE in the university's School of Public Health. "The benefits of medical research advances are clearly not reaching everyone." 

There are many factors contributing to health disparities in the United States and the situation is made more complex by the underrepresentation of racial and ethnic minorities in biomedical and public health research. Distrust of medical and public health research stems from many historical examples of racism and discrimination, including the well-known US Public Health Service Syphilis Study done at Tuskegee, as well as studies conducted on prisoners, mental patients, vulnerable women, poor people and others with diminished autonomy.  Research atrocities committed in the name of science would be easy to ignore were they not so well documented.

"We need to overcome this legacy by rebuilding trust between the minority community and researchers," urges Dr. Stephen B. Thomas, director of the M-CHE. "Community participation in research is key in contributing to the health of future generations."

Developed as part of the M-CHE’s Building Trust between Minorities and Researchers Bioethics Research Infrastructure Initiative, funded by the National Institute on Minority Health and Health Disparities and the Office of the Director, National Institutes of Health, 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 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.

Using empirical data and state of the art instructional design, the program includes three units:

1. Importance of Research:
Users learn about health disparities and the negative health outcomes experienced by different minority groups and can view examples of disparities via an interactive US map. Examples of how research has improved health of Americans convey why research is important in developing effective health recommendations and treatments for specific groups of people and for the whole population

2. Informed Decision Making:
Acknowledging the legacy of research abuse, this section gives critical information about the guidelines, regulations, and laws in place to ensure that research is conducted ethically, and with respect, fairness, and good treatment for all participants. It guides users in factors to consider when deciding to participate in health research.

3. Research, Community and You:
This section provides examples of how people can contribute to research, not just as study participants, but in other active roles such as being a liaison between researchers and community members. This section also offers guidance on how to read, understand and act upon health news reported in the media.  Questions at the end of each page challenge users to consider the information they just learned and apply it to their own lives. 

Throughout the entire program, unique interactive exercises, provocative video clips, stimulating discussion questions, a searchable multimedia resource center, and useful downloads, make the site engaging as well as useful.  The site is designed for use by individuals or for groups exploring the issues together.

"We're proud to share this unique online resource with people all across the country," says Dr. Thomas. "It is the most comprehensive program addressing how and why to participate in research and reflects our commitment to educating communities and promoting health equity."

"The decision about whether or not to participate in research is complex and personal," Dr. Quinn acknowledges. "Rather than telling people they should run out and join the next research study they find, we provide the resources and information they need to make that decision themselves.  The other key is to make sure that they have the opportunity to be asked to join a study." 

The program was created as part of the M-CHE's Building Trust between Minorities and Researchers bioethics research infrastructure initiative, and in collaboration with the design team at Interactive Knowledge, Inc.

Visit the Building Trust website: http://www.buildingtrustumd.org.