Hostname: page-component-7c8c6479df-fqc5m Total loading time: 0 Render date: 2024-03-29T14:16:22.968Z Has data issue: false hasContentIssue false

Practical Steps to Community Engaged Research: From Inputs to Outcomes

Published online by Cambridge University Press:  01 January 2021

Extract

For decades, the dominant research paradigm has included trials conducted in clinical settings with little involvement from communities. However, concerns about the relevance and applicability of the processes or outcomes of such research have led to calls for greater community engagement in the research process. As such, there has been a shift in emphasis from simply recruiting research participants from community settings to engaging community members more broadly in all aspects of the research process. The move toward community engaged research (CEnR) is in part driven by the recognition that inclusion of diverse perspectives in multidisciplinary teams is essential to addressing complex problems. Investigators have come to recognize the inherent value of engaging community members as collaborators in multidisciplinary teams that are conducting research on issues of concern to communities. The insider perspective from community members is now recognized as essential in designing effective and well-received recruitment strategies, culturally appropriate measures, and identifying meaningful and broad-reaching venues for dissemination.

Type
Symposium
Copyright
Copyright © American Society of Law, Medicine and Ethics 2012

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

Israel, B. A. Coombe, C. M. Cheezum, R. R. Schulz, A. J. McGranaghan, R. J. Lichtenstein, R. Reyes, A. G. Clement, J. Burris, A., “Community-Based Participatory Research: A Capacity-Building Approach for Policy Advocacy Aimed at Eliminating Health Disparities,” American Journal of Public Health 100, no. 11 (2010): 20942102.CrossRefGoogle Scholar
Lasker, R. D. Weiss, E. S., and Miller, R., “Partnership Synergy: A Practical Framework for Studying and Strengthening the Collaborative Advantage,” Milbank Quarterly 79, no. 2 (2001): 179205.CrossRefGoogle Scholar
Viswanathan, M. Ammerman, A. Eng, E. Gartlehner, G. Lohr, K. N. Griffith, D. Rhodes, S. Samuel-Hodge, C. Maty, S., and Lux, L., “Community-Based Participatory Research: Assessing the Evidence, in Evidence Report/Technology Assessment,” Prepared by RTI – University of North Carolina Evidence-based Practice Center under Contract No. 290-02-0016 (Rockville, Maryland: Agency for Healthcare Research and Quality, 2004); Stanley, S., “What Works in 2009: Progress or Stagnation?” Probation Journal 56, no. 2 (2009): 153–175Google Scholar
Pinn, V. W. “From Exclusion to Inclusion: Participation in Biomedical Research and the Legacy of the Public Health Syphilis Study at Tuskegee,” in Tuskegee Legacy, in Katz, R. V. and Warren, R. C. eds., The Search for the Legacy of the USPHS Syphylis Study at Tuskegee (Lanham, Maryland: Lexington Books, 2011): At 1–18; National Institutes of Health, NIH Revitalization Act of 1993, Public Law: 103–143.Google Scholar
King, N. M. P. Henderson, G., and Stein, J., “Introduction, Relationships in Research,” in King, N. M. P. Henderson, G. Stein, J., eds., Beyond Regulations: Ethics in Human Subjects Research (Chapel Hill: University of North Carolina Press, 1999): At 13–18.Google Scholar
Public Health Practice Program Office, CDC, “Principles of Community Engagement,” 1997, available at <http://www.cdc.gov/phppo/pce/index.htm> (last visited December 9, 2012).+(last+visited+December+9,+2012).>Google Scholar
Westfall, J. M. and Fagnan, L., “Practice-Based Research-‘Blue Highways’ on the NIH Roadmap,” JAMA 297, no. 4 (2007): 403406; Rosenblum, D., “Access to Core Facilities and Other Research Resources Provided by the Clinical and Translational Science Awards,” Clinical and Translational Science 5, no. 1 (2012): 78–82.CrossRefGoogle Scholar
Isler, Roman M. Odulana, A., and Corbie-Smith, G., “Legacy of Tuskegee,” in Tuskegee Legacy, in Katz, and Warren, , supra note 4, at 89–95.Google Scholar
Corbie-Smith, G. Thomas, S. B. Williams, M. V., and Moody-Ayers, S., “Attitudes and Beliefs of African Americans toward Participation in Medical Research,” Journal of General Internal Medicine 14, no. 9 (1999): 537546.CrossRefGoogle Scholar
See Isler, Roman, supra note 9.Google Scholar
Minkler, M. Blackwell, A. G. Thompson, M., and Tamir, H., “Community-Based Participatory Research: Implications for Public Health Funding,” American Journal of Public Health 93, no. 3(2003): 12101213; Alvarez, A. R. and Gutiérrez, L. M., “Choosing to Do Participatory Research,” Journal of Community Practice 9, no. 1 (2001): 1–20.CrossRefGoogle Scholar
Patient-Centered Outcomes Research Institute, “Mission Statement,” 2012, available at <http://www.pcori.org/about/mission-statement-2/> (last visited December 9, 2012).+(last+visited+December+9,+2012).>Google Scholar
Masuda, J. R. Creighton, G. Nixon, S., and Frankish, J., “Building Capacity for Community-Based Participatory Research for Health Disparities in Canada: The Case of “Partnerships in Community Health Research,” Health Promotion Practice 12, no. 2 (2011): 280292.CrossRefGoogle Scholar
Ross, L. F. Loup, A. Nelson, R. M. Botkin, J. R. Kost, R. Smith, G. R. Jr., and Gehlert, S., “Human Subjects Protections in Community-Engaged Research: A Research Ethics Framework,” Journal of Empirical Research on Human Research Ethics 5, no. 1 (2010): 518.CrossRefGoogle Scholar
Tosh, G. Soares-Weiser, K., and Adams, C. E., “Pragmatic vs. Explanatory Trials: The Pragmascope Tool to Help Measure Differences in Protocols of Mental Health Randomized Controlled Trials,” Dialogues in Clinical Neuroscience 13, no. 2 (2011): 209215.Google Scholar
See Ross, , supra note 16.Google Scholar
Moore, K. A. and Lippman, L. H., “Introduction and Conceptual Framework,” in Moore, K. A. and Lippman, L. H. eds., What Do Children Need to Flourish? (New York, New York: Springer Science+Business Media, 2005): At 1–10.CrossRefGoogle Scholar
Ford, J. G. Howerton, M. W. Lai, G. Y. Gary, T. L. Bolen, S. Gibbons, M. C. Tilburt, J. Baffi, C. Tanpitukpongse, T. P. Wilson, R. F. Powe, N. R., and Bass, E. B., “Barriers to Recruiting Under-represented Populations to Cancer Clinical Trials: A Systematic Review,” Cancer 112, no. 2 (2008): 228242; Katz, R. V. Green, B. L. Kressin, N. R. Claudio, C. Wang, M. Q., and Russell, S. L., “Willingness of Minorities to Participate in Biomedical Studies: Confirmatory Findings from a Follow-Up Study Using the Tuskegee Legacy Project Questionnaire,” Journal of the National Medical Association 99, no. 9 (2007): 1052–1060; Katz, R. V. Russell, S. L. Kegeles, S. S. Kressin, N. R. Green, B. L. Wang, M. Q. James, S. A., and Claudio, C., “The Tuskegee Legacy Project: Willingness of Minorities to Participate in Biomedical Research,” Journal of Health Care for the Poor and Underserved 17, no. 4 (2006): 698–715; McCallum, J. M. Arekere, D. M. Green, B. L. Katz, R. V., and Rivers, B. M., “Awareness and Knowledge of the U.S. Public Health Service Syphilis Study at Tuskegee: Implications for Biomedical Research,” Journal of Health Care for the Poor and Underserved 17, no. 4 (2006): 716–733.CrossRefGoogle Scholar
Fagnan, L. J. Davis, M. Deyo, R. A. Werner, J. J., and Stange, K. C., “Linking Practice-Based Research Networks and Clinical and Translational Science Awards: New Opportunities for Community Engagement by Academic Health Centers,” Academic Medicine 85, no. 3 (2010): 476483; Hood, N. Brewer, T. Jackson, R., and Wewers, M., “Survey of Community Engagement in NIH-Funded Research,” Clinical and Translational Science 3, no. 1 (2010): 19–22.CrossRefGoogle Scholar
Sengupta, S. Strauss, R. P. DeVellis, R. Quinn, S. C. DeVellis, B., and Ware, W. B., “Factors Affecting African-American Participation in AIDS Research,” Journal of Acquired Immune Deficiency Syndromes 24, no. 3 (2000): 275284.CrossRefGoogle Scholar
Wallerstein, N. Duran, B., “Community-Based Participatory Research Contributions to Intervention Research: The Intersection of Science and Practice to Improve Health Equity,” American Journal of Public Health 100, Supplement 1 (2010): S40S46.CrossRefGoogle Scholar
Global Development Research Center Defining Capacity Building, “The Urban Capacity Building Network,” available at <http://www.gdrc.org/uem/capacity-defne.html> (last visited December 9, 2012).+(last+visited+December+9,+2012).>Google Scholar
University of Nebraska Public Policy Center, “MCH Capacity-Building Models: A Summary,” Office of Family Health Nebraska Department of Health and Human Services, 2003, available at <http://ppc.unl.edu/userfiles/file/Documents/projects/MaternalChildHealthCapacityBuildingModels/mch_capacity.pdf> (last visited December 9, 2012).+(last+visited+December+9,+2012).>Google Scholar
Wallerstein, N. B. and Duran, B., “Using Community-Based Participatory Research to Address Health Disparities,” Health Promotion Practice 7, no. 3 (2006): 312323.CrossRefGoogle Scholar
National Institute of Environmental Health Sciences, U.S. Department of Health and Human Services, Partnerships for Environmental Public Health Evaluation Metrics Manual, NIH Publication No.12–7825, 2012, available at <http://www.niehs.nih.gov/pephmetrics> (last visited December 9, 2012).+(last+visited+December+9,+2012).>Google Scholar
Buchanan, D. Reddy, P. Sifunda, S. James, S., and Naidoo, N., “The Role of Community Advisory Boards in Health Research: Divergent Views in the South African Experience,” Journal of Social Aspects of HIV/AIDS 7, no. 3 (2010): 17.Google Scholar
Northridge, M. E., “Toward the Ethical Conduct of Science and a Socially Just World,” in Katz, and Warren, , supra note 4, at 166; Braithwaite, R. L. Griffin, J., and De La Rosa, J. M., “The Southern Male Placebo Study: The Good, the Bad and the Ugly,” in Katz, and Warren, , supra note 4, at 59–68.Google Scholar
Musa, D. Schulz, R. Harris, R. Silverman, M., and Thomas, S. B., “Trust in the Health Care System and the Use of Preventive Health Services by Older Black and White Adults,” American Journal of Public Health 99, no. 7 (2009): 12931299, at 1293.CrossRefGoogle Scholar
Smith, G. C. Adimora, A. A. Youmans, S. Muhammad, M. Blumenthal, C. Ellison, A. Akers, A. Council, B. Thigpen, Y. Wynn, M., and Lloyd, S., “Project GRACE: A Staged Approach to Development of a Community – Academic Partnership to Address HIV in Rural African American Communities,” Health Promotion Practice 12, no. 2 (2011): 293302.CrossRefGoogle Scholar
Jones, L. and Wells, K., “Strategies for Academic and Clinician Engagement in Community-Participatory Partnered Research,” JAMA 297, no. 4 (2007): 407410.CrossRefGoogle Scholar
Schulz-Baldes, A. Vayena, E., and Biller-Andorno, N., “Sharing Benefits in International Health Research,” EMBO Reports 8, no. 1 (2007): 813.Google Scholar
See Westfall, , supra note 8.Google Scholar
Connor, R. and Dovers, S., “Principle and Elements of Institutionsla Change for Sustainable Development,” in Connor, R. and Dovers, S. eds., Institutional Change for Sustainable Development (Northampton, Massachusettes: Edward Elgar Publishing, 2004).CrossRefGoogle Scholar