full-text ►

Community Engagement in Health-Related Research: A Case Study of a Community-Linked Research Infrastructure, Jefferson County, Arkansas, 2011–2013

Community Engagement in Health-Related Research: A Case Study of a Community-Linked Research Infrastructure, Jefferson County, Arkansas, 2011–2013

COMMUNITY CASE STUDY — Volume 12 — July 23, 2015

M. Kathryn Stewart, MD, MPH; Holly C. Felix, PhD, MPA; Mary Olson, DMin; Naomi Cottoms, MA; Ashley Bachelder, MPH, MPS; Johnny Smith; Tanesha Ford, MA; Leah C. Dawson, MS; Paul G. Greene, PhD

Suggested citation for this article: Stewart MK, Felix HC, Olson M, Cottoms N, Bachelder A, Smith J, et al. Community Engagement in Health-Related Research: A Case Study of a Community-Linked Research Infrastructure, Jefferson County, Arkansas, 2011–2013. Prev Chronic Dis 2015;12:140564. DOI: http://dx.doi.org/10.5888/pcd12.140564.

PEER REVIEWED

On this Page

• Abstract
• Background
• Community Context
• Methods
• Outcome
• Interpretation
• Acknowledgments
• Author Information
• References
• Tables

Abstract

Background

Underrepresentation of racial minorities in research contributes to health inequities. Important factors contributing to low levels of research participation include limited access to health care and research opportunities, lack of perceived relevance, power differences, participant burden, and absence of trust. We describe an enhanced model of community engagement in which we developed a community-linked research infrastructure to involve minorities in research both as participants and as partners engaged in issue selection, study design, and implementation.

Community Context

We implemented this effort in Jefferson County, Arkansas, which has a predominantly black population, bears a disproportionate burden of chronic disease, and has death rates above state and national averages.

Methods

Building on existing community–academic partnerships, we engaged new partners and adapted a successful community health worker model to connect community residents to services and relevant research. We formed a community advisory board, a research collaborative, a health registry, and a resource directory.

Outcome

Newly formed community–academic partnerships resulted in many joint grant submissions and new projects. Community health workers contacted 2,665 black and 913 white community residents from December 2011 through April 2013. Eighty-five percent of blacks and 88% of whites were willing to be re-contacted about research of potential interest. Implementation challenges were addressed by balancing the needs of science with community needs and priorities.

Interpretation

Our experience indicates investments in community-linked research infrastructure can be fruitful and should be considered by academic health centers when assessing institutional research infrastructure needs.

Figure. Conceptual framework of the infrastructure. [A text version of this figure is also available.]

Acknowledgments

The authors thank the connectors, the members of the research collaborative and of the community advisory board, and the technical support of the registry received from the UAMS Translational Research Institute’s Comprehensive Informatics Resource Center. We also express our appreciation to Dr Robert Price, Assistant Director of Regional Programs for Research, for his support as our practice partner in the infrastructure. This work was supported by NIH grant no. A1-37154-01, NIH CTSA grant no. 8UL1TR000039, and Arkansas Prevention Research Center, Center for Disease Control and Prevention Grant no. U48 DP001943.

 Top

Author Information

Corresponding Author: M. Kathryn Stewart, MD, MPH, Fay W. Boozman College of Public Health, University of Arkansas for Medical Sciences, 4301 West Markham St, Slot 820, Little Rock, AR 72205. Telephone: 501-526-6625. Email: stewartmaryk@uams.edu.

Author Affiliations: Holly C. Felix, Ashley Bachelder, Leah C. Dawson, Paul G. Greene, Fay W. Boozman College of Public Health, University of Arkansas for Medical Sciences, Little Rock, Arkansas; Mary Olson, Naomi Cottoms, Tri County Rural Health Network, Inc, Helena, Arkansas; Johnny Smith, Shiloh Baptist Church and Ten Thousand Black Men, Pine Bluff, Arkansas; Tanesha Ford, University of Arkansas at Pine Bluff, Pine Bluff, Arkansas.

 Top

References

1. Agency for Healthcare Research and Quality. 2013 National Healthcare Disparities Report. Rockville (MD): US Department of Health and Human Services; 2014. AHRQ Publication No. 12-0006. http://www.ahrq.gov/research/findings/nhqrdr/nhdr13/2013nhdr.pdf. Accessed November 26, 2014.
2. Yancey AK, Ortega AN, Kumanyika SK. Effective recruitment and retention of minority research participants. Annu Rev Public Health 2006;27:1–28. CrossRef PubMed
3. Branson RD, Davis K Jr, Butler KL. African Americans’ participation in clinical research: importance, barriers, and solutions. Am J Surg 2007;193(1):32–9; discussion 40. CrossRef PubMed
4. Braunstein JB, Sherber NS, Schulman SP, Ding EL, Powe NR. Race, medical researcher distrust, perceived harm, and willingness to participate in cardiovascular prevention trials. Medicine (Baltimore) 2008;87(1):1–9. CrossRef PubMed
5. Russell KM, Maraj MS, Wilson LR, Shedd-Steele R, Champion VL. Barriers to recruiting urban African American women into research studies in community settings. Appl Nurs Res 2008;21(2):90–7. CrossRef PubMed
6. Wendler D, Kington R, Madans J, Van Wye G, Christ-Schmidt H, Pratt LA, et al. Are racial and ethnic minorities less willing to participate in health research? PLoS Med 2006;3(2):e19.CrossRef PubMed
7. Terpstra J, Coleman KJ, Simon G, Nebeker C. The role of community health workers (CHWs) in health promotion research: ethical challenges and practical solutions. Health Promot Pract 2011;12(1):86–93. CrossRef PubMed
8. Minkler M, Wallerstein N, editors. Community-based participatory research for health: from process to outcomes. 2nd edition. San Francisco (CA): Jossey-Bass; 2008.
9. Shalowitz MU, Isacco A, Barquin N, Clark-Kauffman E, Delger P, Nelson D, et al. Community-based participatory research: a review of the literature with strategies for community engagement. J Dev Behav Pediatr 2009;30(4):350–61. CrossRef PubMed
10. US Census Bureau. American Community Survey; 2013. http://factfinder.census.gov/faces/nav/jsf/pages/searchresults.xhtml?refresh=t. Accessed February 23, 2015.
11. Centers for Disease Control and Prevention, National Center for Health Statistics. CDC WONDER: about underlying cause of death 1999–2013. http://wonder.cdc.gov/ucd-icd10.html. Accessed February 23, 2015.
12. Felix HC, Mays GP, Stewart MK, Cottoms N, Olson M. The care span: Medicaid savings resulted when community health workers matched those with needs to home and community care. Health Aff (Millwood) 2011;30(7):1366–74. CrossRef PubMed
13. Stewart MK, Felix HC, Cottoms N, Olson M, Shelby B, Huff A, et al. Capacity building for long-term community-academic health partnership outcomes. Int Public Health J 2013;5(1):115–28.PubMed
14. Centers for Disease Control and Prevention. Behavioral Risk Factor Surveillance System, 2012. http://www.cdc.gov/brfss/. Accessed June 16, 2015.
15. National Cancer Institute. Health Information National Trends Survey. http://hints.cancer.gov/. Accessed June 16, 2015.
16. Sullivan G, Hunt J, Haynes TF, Bryant K, Cheney AM, Pyne JM, et al. Building partnerships with rural Arkansas faith communities to promote veterans’ mental health: lessons learned. Prog Community Health Partnersh 2014;8(1):11–9. CrossRef PubMed
17. Yeary K, Bryant K, Haynes T, Turner J, Smith J, Kuo D, et al. Community exchange of “best practices” to conduct a multi-level, mixed methods health assessment across two counties: Faith-Academic Initiative for Transforming Health (FAITH) in the Delta. Proceedings of the 2014 Annual Meeting of the American Public Health Association, New Orleans, Louisiana, November 15–19, 2014.
18. Chadiha LA, Washington OGM, Lichtenberg PA, Green CR, Daniels KL, Jackson JS. Building a registry of research volunteers among older urban African Americans: recruitment processes and outcomes from a community-based partnership. Gerontologist 2011;51(Suppl 1):S106–15. CrossRef PubMed
19. Felix HC, Lee D, Stewart MK, Greene PG. Engagement of community health workers in the research enterprise: a survey of organizations and the research roles given CHWs. Journal of Community Engagement and Higher Education 2013;5(1):13–23.
20. Cottler LB, McCloskey DJ, Aguilar-Gaxiola S, Bennett NM, Strelnick H, Dwyer-White M, et al. Community needs, concerns, and perceptions about health research: findings from the clinical and translational science award sentinel network. Am J Public Health 2013;103(9):1685–92. CrossRef PubMed