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Environmental Factor, April 2012

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Conference explores best practices of community-engaged research

By Robin Arnette and Brant Hamel

Joan Packenham, Ph.D.

Packenham welcomed conference attendees and introduced several speakers. As director of the OHRC, she works to establish a culture of protecting human participants in research studies. (Photo courtesy of John Maruca)

Keith Norris, M.D.,

Norris and Packenham fielded questions following Norris’ presentation. (Photo courtesy of Steve McCaw)

NIEHS and the U.S. Department of Health and Human Services Office for Human Research Protections (OHRP) sponsored the South Atlantic National Research Conference (SANC), “Engaging the Community for Research Success: What Scientists and IRBs Need to Know,” March 21-22 at the Raleigh Convention Center in North Carolina. The conference brought together more than 550 registered participants, which included principal investigators, research and clinical personnel, institutional officials, deans, vice-chancellors, human subject protection professionals, legal counsel, institutional review board (IRB) members, community health advocates, and public health officials.

The purpose of SANC was to gain a better understanding of ethical, regulatory and policy issues involved in conducting community-engaged research in national and international settings; to learn best practices in community-engaged research; and to provide a forum for researchers, regulators, and community representatives to learn from one another, network, and form partnerships. The two-day gathering included keynote and plenary sessions, and twenty eight break-out sessions.

NIEHS advocates protection of human research participants

The NIEHS Office of Human Research Compliance (OHRC), which falls under the Clinical Research Program, Division of Intramural Research, developed the vision and theme for SANC, and served as host and major organizer. The OHRC is responsible for managing a comprehensive human research protection program at the Institute, and does so by establishing educational and training programs, offering suggestions during protocol development, providing guidance on federal and state regulations, conducting daily administration of the NIEHS IRB, and serving as liaison with the National Institutes of Health Office of Subjects Human Research Protections.

Joan Packenham, Ph.D., director of the OHRC and vice chair of the NIEHS IRB, said the conference was a great way to raise awareness about the responsibilities and challenges of conducting successful community-engaged research.

“Hosting this conference was an important part of what we do to equip community-engaged research stakeholders with useful information,” Packenham said. “The speakers have been outstanding, and the conference has been a perfect forum to spur dialogue.”

NIEHS has a long-standing commitment with community-based participatory research through the Division of Extramural Research and Training (DERT). DERT has funded research centers through its Partnerships for Environmental Public Health (PEPH), a program that brings together scientists, community members, educators, health care providers, and public health officials, in the shared goal of conducting research that is fully integrated with the community.

Research subjects or research partners?

During the conference, keynote speaker Keith Norris, M.D., executive vice president for research and health affairs at Charles R. Drew University of Medicine and Science, said a vital feature of community-engaged research is that researchers must build a true partnership with the community they are studying and consider them as participants in a shared program of research, not as research subjects. Norris noted that researchers must be willing to engage the community on its own ground and include community members in all aspects of research, from conception to communication of results. He used the analogy that a truly successful community-engaged research program is like a marriage that involves a full and equal commitment of both parties to a common goal.

Community-level ethical considerations

Several of the conference speakers emphasized that communities may have serious concerns about how research results impact the reputation of the community and how such results are reported. Communities also want to see that results and knowledge obtained from studies come back to the research participant and to the community at-large, not just published in journals. According to Elmer Freeman, executive director of the Center for Community Health Education Research and Service in Boston, participants have insisted that results get reported in the popular press or in local news, in addition to traditional academic publishing.

Communication is key to success

Many cultures have unique considerations that may affect how participants are recruited and the study is conducted. Ruth Ellis, M.D., a staff clinician in the Laboratory of Malaria Immunology and Vaccinology at the National Institute of Allergy and Infectious Diseases, noted that failing to treat the community as a partner in research could lead to a failure to recruit and retain subjects or to assess the true impact of innovations. In the worst case, Ellis said a loss of community trust could shut down the entire research program, which actually occurred due to a breakdown in communication between researchers and local residents in Jakarta, Indonesia.

Does the Belmont Report provide considerations for community risks and benefits?

Robert Levine, M.D., is a professor of medicine and lecturer in pharmacology at Yale School of Medicine and special consultant to the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. Levine was instrumental in crafting the 1978 Belmont Report, and structured his talk around whether the Belmont Report and the Common Rule of 1991 spoke to the fundamental issues of truly community-engaged research. He conceded that the Belmont's ethical principles could be seen as the necessary predecessor to the more ambitious goals of community-engaged research, where researchers and participants, who are no longer considered subjects and subordinates, ultimately reach consensus about objectives, study design, and results.

Feedback from conference attendees

Based on conference evaluations, attendees have overwhelming agreed that the conference was needed and provided an important opportunity for learning and discussion. Many have requested that OHRC sponsor another conference to continue the dialogue.

(Brant Hamel Ph.D., is an Intramural Research Training Award (IRTA) fellow in the NIEHS Laboratory of Signal Transduction.)

Ivor Pritchard, Ph.D.

Ivor Pritchard, Ph.D., senior advisor to the director in OHRP, delivered a thought-provoking talk encouraging participants to critically consider how to best engage an IRB in community-engaged research proposals. (Photo courtesy of Steve McCaw)

Linda Birnbaum, Ph.D., and Edward Emmett, M.D.,

NIEHS/NTP Director Linda Birnbaum, Ph.D., and Edward Emmett, M.D., from the Hospital of the University of Pennsylvania, discussed their experiences and successes in communicating research findings with local communities. Birnbaum noted that NIEHS has a history of supporting community-engaged research, saying, “You cannot conduct environmental health research unless the community is involved from the very inception.” (Photo courtesy of Steve McCaw)

Stephen Thomas, Ph.D.,

Stephen Thomas, Ph.D., director of the University of Maryland Center for Health Equity, led an interactive discussion on the ethical considerations of community-engaged research in minority communities. (Photo courtesy of Steve McCaw)

Meeting attendees talking

With several networking breaks, meeting attendees had lots of opportunities to talk. (Photo courtesy of Steve McCaw)

Robert Levine, M.D.

Levine said, “Belmont marked a great advance over letting black men die miserably of syphilis in Tuskegee, but today's generation needs genuine community engagement to overcome the memories of Tuskegee, the legacies of racism, sexism, and imperialism, socioeconomic hierarchy, and the distrust of government.” (Photo courtesy of Steve McCaw)

South Atlantic National Research Conference audience

Many in the conference audience raised their hands in response to questions from Pritchard. (Photo courtesy of Steve McCaw)

David Resnik, J.D., Ph.D.

David Resnik, J.D., Ph.D., bioethicist and chair of the NIEHS IRB, posed several questions during the two-day conference. (Photo courtesy of Steve McCaw)

Community Voices panel

Thomas moderated a panel discussion titled, “Community Voices,” which talked about the ethical considerations of community-engaged research in minority and disadvantaged communities. Seated from left to right, Elaine Hart-Brothers, M.D., Alan Richmond, Missy Brayboy, Melvin Jackson, Freeman, and Edgar Villanueva. Panelist Tony Locklear is not pictured. (Photo courtesy of Steve McCaw)

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