Community Participation Key to Improving Medical Research

March 04, 2009

The University of Rochester Medical Center (URMC) has launched a new initiative to raise awareness and increase community participation in medical research. The effort, which is being supported by the Clinical and Translational Science Institute (CTSI), will pay particular attention to increasing the number of African Americans and Latinos enrolled in clinical trials, groups that are historically underrepresented in medical studies.

“Underrepresentation by population groups in health research hampers our ability to develop new ways to understand and treat diseases in these groups,” said Nancy M. Bennett, M.D., the director of the URMC Center for Community Health. “However, we know that participation increases with more information, better access, and effective communication. With this effort we hope to stimulate a community dialogue about the value of research in improving health.”

The initiative is comprised of a newly designed clinical trials website, a public information phone number, and a public awareness campaign.   The web site (www.healthresearch.urmc.edu) helps potential volunteers understand the importance and basics of clinical trials, learn how to participate in research, search a database of studies that are currently enrolling volunteers, and addresses issues such as safety, time commitment, and compensation. URMC is also running a series of prints ads designed to raise public awareness regarding medical research and direct people to the new website. 

The campaign is a part of a broader effort underway at the School of Medicine and Dentistry (SMD) to re-engineer clinical research in a manner that translates science more quickly into new ways to understand, treat, and prevent disease. The recruitment program is one of the central components of the CTSI and is being funded by a share of a $40 million grant from the National Institutes of Health that the SMD received two years ago. 

“One of the fundamental obstacles to advancing medical research has been the difficulty that many investigators have in recruiting and retaining volunteers in clinical trials,” said David Guzick, M.D., Ph.D., dean of the SMD and co-director of the CTSI.  “The challenge for 21st century medicine is to break down barriers to research and create new ways to ensure that the scientific discoveries made by our researchers are being harnessed to improve health. Designing clinical trials that are effective, safe, and representative of all segments of the population are a critical step in that process.”

The URMC public information campaign was developed based on input from the general community and from community leaders. Focus groups, surveys, and interviews were used to better understand community perceptions regarding medical research and the issues that may prevent individuals from participating. The research found that – while education, race, socio-economic factors, and fear all play a role in people’s inclination and ability to volunteer for medical research – perceptions could be changed when people were presented with more information and when logistical barriers to participation (transportation, day care, etc.) were addressed. 

“Enrolling people is clinical trials is a challenge no matter what the population,” said Ann Dozier, R.N., Ph.D., associate professor in the Department of Community and Preventive Medicine. “However, these challenges tend to be magnified in many minority populations. This is not just a Rochester-problem, this is a national trend.”

Dozier asserts that participation across all groups is critical to medical research. Many diseases, such as cancer, diabetes, and hypertension are more prevalent in minority groups. Without a representative cross-section of the population participating in research, scientists are denied a full understanding of both the problem and potential solutions.

“The bottom line is that if we don’t have individuals representing these populations participating in research, then we won’t know what treatments are more effective,” said Dozier. “We can’t assume that if it works in one group of people then those results will apply to everyone.” 

The campaign being unveiled by the Medical Center today is one component of a multi-faceted approach to research recruitment which includes programs to help researchers develop effective studies and recruitment strategies, efforts to build a network of community physicians that can help identify study participants, and developing partnerships with community organizations. 

“We understand that the issue of research participation does not solely fall upon the individual volunteer,” said Bennett. “We, as an institution, need to be aware of the barriers, figure out how to overcome them, design more effective clinical trials, and reach out to the community. After all, they are our most important partners.”   

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Mark Michaud
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