Engaging the Community: Community-Based Participatory Research and Team Science
- 1.1k Downloads
This chapter describes the potential for incorporating community partner perspectives into contemporary team science by recounting contributions made by community–researcher partnerships characteristic of community-based participatory research (CBPR). These CBPR partnerships look similar to cross-disciplinary academic teams in their histories and imperatives to create shared leadership, mutual benefit, and multidirectional trust and respect. First, we define and then situate CBPR within the range of community-engaged research practices and discuss the opportunities as well as challenges for CBPR and community-engaged research (CEnR) to become established within Academic Health Science centers and clinical translational science award (CTSA) infrastructures. We will share summary results of CTSA surveys about community engagement, from the academic perspective and from community perspectives on barriers they continue to face. An in-depth example will be shared of a successful community–academic partnership that grew from a pilot study to a large-scale clinical and population intervention center. We will end with a CBPR conceptual model that showcases how cross-disciplinary teams are needed to describe the richness of contexts in which research take place, to frame the development and use of measures and metrics to evaluate partnerships, and to identify promising participatory practices associated with research and health outcomes. Recommendations are provided for engagement of community partners within the cross-disciplinary team science enterprise.
KeywordsCommunity-based participatory research Community engaged research Academic-community research collaborations Collaborative research
- Abrams DB. Applying transdisciplinary research strategies to understanding and eliminating health disparities. Health Educ Behav. 2016;33(4):515–31.Google Scholar
- Borner K, Contractor N, Falk-Krzesinski HJ, Fiore S, Hall K, Keyton J, Spring B, Stokols D, Trochim W, Uzzi B. A multi-level systems perspective for the science of team science. Commentary Team Science. Sci Transl Med. 2010;2(49):49cm24. https://doi.org/10.1126/scitranslmed.3001399.CrossRefPubMedPubMedCentralGoogle Scholar
- Cacari-Stone L, Wallerstein N, Garcia A, Minkler M. The Promise of Community Based Participatory Research for Health Equity: A Conceptual Model for Bridging Evidence with Policy, American Journal of Public Health 2014;104(9):1615–23.Google Scholar
- Cooper LA, Ortega AN, Ammerman AS, Buchwald D, Paskett ED, Powell LH, Thompson B, Tucker KL, Warnecke RB, McCarthy WJ, Viswanath KV, Henderson JA, Calhoun EA, Williams DR. Calling for a bold new vision of health disparities intervention research. Am J Public Health. 2015;105(Suppl 3):S374–6.PubMedPubMedCentralGoogle Scholar
- CTSA U54, Clinical and Translational Science Award U54. 2016. http://grants.nih.gov/grants/guide/pa-files/PAR-15-304.html. Accessed 2 April 2016.
- De Las Nueces D, Hacker K, DiGirolamo A, Hicks LS. A systematic review of community-based participatory research to enhance clinical trials in racial and ethnic minority groups. Health Serv Res., in Measuring and Analyzing Health Care Disparities. 2012;47:1363. https://doi.org/10.1111/j.1475-6773.2012.01386.x.CrossRefPubMedCentralGoogle Scholar
- Duran B, Oetzel J, Pearson C, Magarati M, Zhou C, Villegas M, Muhammad M, Belone L, Wallerstein N. Promising practices and outcomes: learnings from a CBPR cross-site national study, Prog Community Health Partnersh. in press.Google Scholar
- Eder M, Evans E, Funes M, Hong H, Reuter K, Ahmed S, Calhoun K, Corbie-Smith G, Dave G, DeFino M, Harwood E, Kissack A, Kleinman LC, Wallerstein N. Defining and measuring community engagement and community-engaged research: CTSA Institutional Practices. Prog Community Health Partnersh. 2018;12(2):145–56.PubMedGoogle Scholar
- Graham PW, et al. What is the role of culture, diversity, and community engagement in transdisciplinary translational science? Transl Behav Med. 2015;6:1–10.Google Scholar
- Hadorn GH, Hoffmann-Riem H, Biber-Klemm S, Grossenbacher-Mansuy W, Joye D, Pohl C, Wiesmann U, Zemp E, editors. Handbook of transdisciplinary science. Dordrecht: Springer; 2008.Google Scholar
- Institutional Clinical and Translational Science Award. 2016. https://grants.nih.gov/grants/guide/rfa-files/RFA-RM-06-002.html. Accessed 2 July 2016.
- IOM, (2013 Institute of Medicine). The CTSA program at NIH: opportunities for advancing clinical and translational research. Washington, DC: Institute of Medicine; 2013.Google Scholar
- Israel BA, Eng E, Schulz AJ, Parker EA. Methods in community based participatory research for health. 2nd ed. San Francisco, CA: Jossey-Bass; 2013.Google Scholar
- Jernigan V, Peercy M, Branam D, Saunkeah B, Wharton D, Winkleby M, Lowe J, Salvatore A, Dickerson D, Belcourt A, D’Amico E, Patten CA, Parker M, Duran B, Harris R, Buchwald D. Beyond health equity: achieving wellness within American Indian and Alaska native communities. Am J Public Health. 2015;105:S3.Google Scholar
- Kagawa-Singer M, Dressler WW, George SM, Elwood WN. The cultural framework for health: an integrative approach for research and program design and evaluation. In: Office of Behavioral and Social Science. Bethesda, MD: National Institutes of Health; 2012.Google Scholar
- Kaplow JB, Calhoun K, Porter Howard L, Follebout M. Implementing trauma- and grief-informed assessment in underserved communities: towards a best practice assessment model. School-community Health Alliance of Michigan Conference, Grand Rapids, MI. 2015.Google Scholar
- Kaplow JB, Layne CM, Oosterhoff B, Goldenthal H, Howell KH, Wamser-Nanney R, Burnside A, Calhoun K, Pynoos R, et al. Validation of the persistent complex bereavement disorder (PCBD) checklist: a developmentally-informed assessment tool for bereaved youth. J Trauma Stress. 2018;31(2):244–54.PubMedPubMedCentralGoogle Scholar
- Kaplow JB, Layne CM, Pynoos RS, Cohen J, Lieberman A. DSM-V diagnostic criteria for bereavement-related disorders in children and adolescents: developmental considerations. Psychiatry. 2012;75(3):242–65.Google Scholar
- Kaplow JB, Rolon-Arroyo B, Layne CM, Rooney E, Oosterhoff B, Hill R, Steinberg A, Lotterman J, Gallagher K, & Pynoos RS. Validation of the UCLA PTSD Reaction Index for DSM-5 (RI-5): A developmentally-informed assessment tool for trauma-exposed youth. Journal of the American Academy of Child and Adolescent Psychiatry; 2019. https://doi.org/10.1016/j.jaac.2018.10.019
- Kastelic S, Wallerstein N, Duran B, Oetzel J. Socio-ecologic framework for CBPR: development and testing of a model. In: Wallerstein N, Duran B, Oetzel J, Minkler M, editors. Community-based participatory research for health: advancing social and health equity. 3rd ed. San Francisco: Jossey-Bass; 2018. p. 77–94.Google Scholar
- Layne CM, Kaplow JB, Pynoos RS. Persistent Complex Bereavement Disorder (PCBD) Checklist – Youth Version 1.0. and Test Administration Manual. Los Angeles: University of California; 2014. http://oip.ucla.edu/sites/default/files/1-Pager_PCBD_Checklist.pdfGoogle Scholar
- Layne CM, Kaplow JB, Youngstrom E. Evidence-based assessment of childhood trauma and bereavement: concepts, principles, and practices. In: Cloitre M, Landolt M, Schnyder U, editors. Evidence-based treatments for trauma-related disorders in children and adolescents. New York: Springer Publications; 2018.Google Scholar
- Lucero J, Wallerstein N, Duran B, Alegria M, Greene-Moton E, Israel B, Kastelic S, Magarati M, Oetzel J, Pearson C, Schulz A, Villegas M, White Hat E. Development of a mixed methods investigation of process and outcomes of community based participatory research. J Mix Methods Res. 2018;12:55. https://doi.org/10.1177/1558689816633309.CrossRefPubMedGoogle Scholar
- Martinez L, et al. Community conceptualizations of health: implications for transdisciplinary team science. Clin Transl Sci. 2015;4(3):163–7.Google Scholar
- McCloskey DJ, et al. Clinical and translational science awards community engagement key function committee task force on the principles of community engagement. In: Principles of community engagement, vol. 2011. 2nd ed. Bethesda, MD: National Institutes of Health; 2013.Google Scholar
- Minkler M, Garcia A, Rubin V, Wallerstein N. Community-based participatory research: a strategy for building healthy communities and promoting health through policy change. In: A report to the California endowment. Oakland, CA: PolicyLink; 2012.Google Scholar
- NARCH Grants, Federal Register. A Notice by the Indian Health Service on 12/22/2008. 2008. https://www.federalregister.gov/articles/2008/12/22/E8-30300/native-american-research-centers-for-health-narch-grants#h-5. Accessed 28 Feb 2016.
- Oetzel J, Wallerstein N, Duran B, Sanchez-Youngman S, Nguyen T, Woo K, Wang J, Schulz AM, Kaholokula JK, Israel BA, Alegria M. Impact of Participatory Health Research: A Test of the CBPR Conceptual Model: Pathways to Outcomes within Community-Academic Partnerships, Biomedical Research International, Article ID; 2018a, 7281405, https://doi.org/10.1155/2018/7281405.
- Oetzel JG, Duran B, Sussman A, Magarati M, Khodyakov D, Wallerstein N. Evaluation of CBPR partnerships and outcomes: lessons and tools from the research for improved health study. In: Wallerstein N, Duran B, Oetzel J, Minkler M, editors. Community-based participatory research for health: advancing social and health equity. 3rd ed. San Francisco: Jossey-Bass; 2018b. p. 237–50.Google Scholar
- Pearson CR, Duran B, Magarati M, Oetzel J, Zhou C, Lucero J, Villegas M, Wallerstein N. Research for improved health: variability and impact of structural characteristics in federally-funded community engaged research studies. Prog Community Health Partnersh. 2015;9(1):17–29.PubMedPubMedCentralGoogle Scholar
- Saltzman W, Layne CM, Pynoos RS, Olafson E, Kaplow JB, Boat B. Trauma and grief component therapy for adolescents: a modular approach to treating traumatized and bereaved youth. Cambridge: Cambridge University Press; 2018.Google Scholar
- Stokols D, Hall KL, Taylor BK, Moser RP. The science of team science: overview of the field and introduction to the supplement. Am J Prevent Med. 2008;35(2 Suppl):S77–89.Google Scholar
- Wallerstein N, Duran B, Oetzel J, Minkler M. Community-based participatory research for health: advancing social and health equity. 3rd ed. San Francisco: Jossey-Bass; 2018.Google Scholar
- Wallerstein N, Oetzel J, Duran B,Magarati M, Pearson C, Belone L, Davis J, Dewindt L, Lucero J, Ruddock C, Sutter E, Villegas M, Dutta, M. Culture-Centeredness in Community Based Participatory Research: Its Impact on Health Intervention Research, Health Education Research, 2019. https://doi.org/10.1093/her/cyz021.
- Wallerstein N, Oetzel J, Duran B, Tafoya G, Belone L, Rae R. What predicts outcomes in CBPR? In: Minkler M, Wallerstein N, editors. Community based participatory research for health: process to outcomes. 2nd ed. San Francisco: Jossey Bass; 2008. p. 371–92.Google Scholar
- Zerhouni EA, Alving B. Clinical and translational science awards: a framework for a national research agenda. Trans Res. 2006;148(1):4–5.Google Scholar