Engaging Communities in Research
The University of Florida Clinical and Translational Science Institute’s Community Engagement and Research Program is committed to advancing the science of community engagement in collaboration with other CTSA hubs across the country. The program is currently involved in two multi-CTSA research collaborations to develop methods of effective community dialogue and research, described further below: the Sentinel Network for Community-based Participatory Research, and the Trust Project. In addition, the program is collaborating with multiple partners and other CTSA hubs to develop a strategy for expanding and evaluating the Our Community, Our Health forum as a national engagement and dissemination activity. To learn more about the community engagement activities and resources of the national Clinical and Translational Science Awards program, visit the National Center for Advancing Translational Sciences’ Engaging Communities in Research page.
CTSA Sentinel Network for Community-based Participatory Research
While more than 80,000 clinical trials are conducted each year in the United States alone, less than 2% of the population participates in health research. The Sentinel Network, a collaborative project of six CTSA hubs across the U.S., was created to increase community participation and diversity in health research. Using the Community Health Worker model developed at HealthStreet by Dr. Linda B. Cottler, these programs work with and for the community to increase participation in health research, build trust in the research enterprise, and offer medical and social resources.
For the Sentinel Network’s initial study, Community Health Workers at each of five CTSA hubs assessed community members in laundromats, parks, bus stops, shopping centers and other community sites using an informed consent process and a structured health intake. In 2013, the network published the study’s results in the American Journal of Public Health. The top health needs and concerns among the 5,579 individuals assessed, regardless of self-reported race, were hypertension, diabetes, cancer, weight, and heart problems. Attitudes towards research were also assessed. African Americans were more likely to state their interest in and willingness to participate in research (91%) than were Caucasians (86%) or any other racial group. These results are contrary to previous research and common perceptions about the willingness of African Americans to participate in health research. African Americans also endorsed a higher rate of fair compensation for a study 1.5 hours in duration that included a blood draw ($81.60) than Caucasians ($61.68) or any other racial group.
The Sentinel Network is now focused on a new study that aims to better understand outcomes of community engagement programs. In addition to UF, the Sentinel Network includes five CTSA hubs: Washington University in St. Louis, University of California, Davis, University of Michigan, Albert Einstein College of Medicine of Yeshiva University, and University of Rochester. Learn more about the Sentinel Network’s research:
- Linda B. Cottler, Donna Jo McCloskey, Sergio Aguilar-Gaxiola, Nancy M. Bennett, Hal Strelnick, Molly Dwyer-White, Deborah E. Collyar, Shaun Ajinkya, Sarena D. Seifer, Catina Callahan O’Leary, Catherine W. Striley, and Bradley Evanoff (2013). Community Needs, Concerns, and Perceptions About Health Research: Findings From the Clinical and Translational Science Award Sentinel Network. American Journal of Public Health. e-View Ahead of Print. doi: 10.2105/AJPH.2012.300941
- UF news release, April 2, 2013: African-Americans express keen interest in medical research participation
- CTSA Progress Report, 2009-2011: Enhancing the Health of Our Communities and the Nation
In partnership with four CTSA hubs, the UF CTSI examined trust between academic and community partners in research through in-person and online data collection. Results are being used to form an initial conceptual framework for developing and maintaining trust in community-engaged research partnerships.
Completed in 2014, the Trust Project had three aims:
- Elicit community members’, academicians’ and healthcare providers’ understanding of trust to identify and define determinants of developing trust within community-engaged partnerships;
- Prioritize determinants of trust within community-engaged partnerships and explore the relative importance of each determinant to developing trust in community-engaged partnerships and public trust in research; and
- Apply prioritized set of key determinants of trust to guide the development of testable conceptual frameworks illustrating the pathways linking trust within community-engaged partnerships to public trust in research.
A total of 186 participants including community members, academics and healthcare providers offered input regarding the factors they think contribute to trust between community and academic partners in research, which was then compiled, analyzed and sorted into a concept map. The project identified 125 unique items in five thematic clusters that are important to understanding, developing and maintaining trust in community-academic partnered research: communication, credibility and methodology to anticipate and resolve problems; committed partnerships; sustainability; authentic, effective and transparent communication; and mutually respectful and reciprocal relationships.
In addition to UF (principal investigator: Dr. Linda Cottler), partnering CTSA hubs include: University of Arkansas for Medical Sciences (principal investigator: Dr. Ann Cheney); University of California, Los Angeles (principal investigator: Dr. Arleen Brown); University of North Carolina at Chapel Hill (principal investigator: Dr. Giselle Corbie-Smith); and the University of Pittsburgh (principal investigator: Dr. Jessica Burke).