Appendix A: Community Partner Spotlights in Study Newsletters [PDF download]
Appendix B: Example Memorandum of Understanding [PDF download]
Appendix D: Glossary of Terms [PDF download]
Appendix E: FAQ’s [PDF download]
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- United States Department of Health and Human Services, Office of Research Integrity. Available at: https://ori.hhs.gov/module-1-introduction-what-research. Accessed May 1, 2022.
- National Academies of Sciences, Engineering, and Medicine. 1995. On Being a Scientist: Responsible Conduct in Research, Second Edition. Washington, DC: The National Academies Press. Available at https://doi.org/10.17226/4917. Accessed June 4, 2022.
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- Research: What’s Community Got to Do with It? Toolkit for Community Organizations Interested in Research. (2019). Center for Clinical and Translational Science, University of Illinois at Chicago. Retrieved from http://www.ccts.uic.edu/content/target-populations-toolkit. Accessed April 4, 2022.
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- Holzer JK, Ellis L, Merritt MW. Why we need community engagement in medical research. J Investig Med. 2014;62(6):851-855. doi:10.1097/JIM.0000000000000097
- Centers for Disease Control and Prevention Principles of community engagement (1st ed) Atlanta (GA): CDC/ATSDR Committee on Community Engagement; 1997.
- Dick DM. Rethinking the Way We Do Research: The Benefits of Community-Engaged, Citizen Science Approaches and Nontraditional Collaborators. Alcohol Clin Exp Res. 2017;41(11):1849-1856. doi:10.1111/acer.13492
- Alter, Driver, Frumento, Howard, Shufstall and Whitmer (2017), Community Engagement for Collective Action: A Handbook for Practitioners. Invasive Animals CRC, Australia.
- Martinez LS, Russell B, Rubin CL, Leslie LK, Brugge D. Clinical and translational research and community engagement: implications for researcher capacity building. Clin Transl Sci. 2012;5(4):329-332. doi:10.1111/j.1752-8062.2012.00433.x
- Kahn KL. Moving research from bench to bedside to community: there is still more to do. J Clin Oncol. 2008;26(4):523-526. doi:10.1200/JCO.2007.13.1870
- Institute of Translational Health Sciences. University of Washington. Definitions of Clinical and Translational Research. Available at: https://www.iths.org/investigators/definitions/definitions-of-clinical-and-translational-research/. Accessed June 6, 2022.
- Baquet CR. A model for bidirectional community-academic engagement (CAE): overview of partnered research, capacity enhancement, systems transformation, and public trust in research. J Health Care Poor Underserved. 2012;23(4):1806-1824. doi:10.1353/hpu.2012.0155
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- Handley M, Pasick R, Potter M, Oliva G, Goldstein E, Nguyen T. (2010) Community-Engaged Research: A Quick-Start Guide for Researchers. From the Series: UCSF Clinical and Translational Science Institute (CTSI) Resource Manuals and Guides to Community-Engaged Research, P. Fleisher, ed. Published by Clinical Translational Science Institute Community Engagement Program, University of California San Francisco.
- Agency for Toxic Substances and Disease Registry. Clinical and Translational Science Awards Consortium Community Engagement Key Function Committee Task Force on the Principles of Community Engagement – Second Edition, 2011. https://www.atsdr.cdc.gov/communityengagement/ . Published June 2011. Accessed February 14, 2022.
- Key KD, Furr-Holden D, Lewis EY, et al. The Continuum of Community Engagement in Research: A Roadmap for Understanding and Assessing Progress. Prog Community Health Partnersh. 2019;13(4):427-434. doi:10.1353/cpr.2019.0064
- Pasick R, Oliva G, Goldstein E, Nguyen T, Vargas R, Kiefer C. (2010) Community-Engaged Research: A Quick-Start Guide for Community-Based Organizations. From the Series: UCSF Clinical and Translational Science Institute (CTSI) Resource Manuals and Guides to Community-Engaged Research, P. Fleisher, ed. Published by Clinical Translational Science Institute Community Engagement Program, University of California San Francisco.
- Cruz, E. and Bakken, L. Community Guidelines for Engaging with Researchers and Evaluators A Toolkit for Community Agencies, Organizations and Coalitions. https://ictr.wisc.edu/community-guidelines-for-engaging-with-researchers-and-evaluators/. Published 2020. Accessed February 14, 2022.
- Han, HR., Xu, A., Mendez, K.J.W. et al. Exploring community engaged research experiences and preferences: a multi-level qualitative investigation. Res Involv Engagem 7, 19 (2021). https://doi.org/10.1186/s40900-021-00261-6
- Haldane V, Chuah FLH, Srivastava A, et al. Community participation in health services development, implementation, and evaluation: A systematic review of empowerment, health, community, and process outcomes. PLoS One. 2019;14(5):e0216112. Published 2019 May 10. doi:10.1371/journal.pone.0216112
- Bassler, Brasier, Fogle and Taverno (2008), Developing Effective Citizen Engagement: A How-to Guide for Community Leaders. Center for Rural America. http://www.rural.palegislature.us/Effective_Citizen_Engagement .pdf
- Public Health Institute. Center for Wellness and Nutrition. Community engagement toolkit: A participatory action approach towards health equity and justice. Available at: http://www.bmsg.org/resources/publications/community-engagement-toolkit-a-participatory-action-approach-towards-health-equity-and-justice/. Accessed April 25, 2022.
- Artiga, Samantha, and Hinton, Elizabeth, Beyond Health Care: The Role of Social Determinants in Promoting Health and Health Equity, May 10, 2018 brief. Kaiser Family Foundation. Available at: kff.org. Accessed July 7, 2022.
- Niles, Meredith T., Shimanski, Lesley A., McKiernan, Eric C., Alperin, Juan Pablo. Why we publish where we do: Faculty publishing values and their relationship to review, promotion and tenure expectations. Published: March 11, 2020. https://doi.org/10.1371/journal.pone.0228914
- Rice, Todd, The Historical, Ethical, and Legal Background of Human Subjects Research, Respiratory Care, October 2008; 53 (10): 1325-1329.
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- Public Health Notes. Research Ethics: Definitions, Principles, and Advantages. Available at: https://www.publichealthnotes.com/research-ethics-definition-principles-and-advantages/. Accessed May 16, 2022.
- Rice TW. The historical, ethical, and legal background of human-subjects research. Respir Care. 2008;53(10):1325-1329.
- The Nuremberg Code and its impact on clinical research. MassDevice. Available at: https://www.massdevice.com/the-nuremberg-code-and-its-impact-on-clinical-research/. Accessed July 7, 2022.
- University of Nevada, Las Vegas. History of Research Ethics. Available at: https://www.unlv.edu/research/ORI-HSR/history-ethics. Accessed July 10, 2022.
- Patient-Centered Outcomes Research Institute (PCOR). Engagement rubric for applicants. 2016; https://www.pcori.org/sites/default/files/Engagement-Rubric.pdf. Accessed April 25, 2022.
- Scharff DP, Mathews KJ, Jackson P, Hoffsuemmer J, Martin E, Edwards D. More than Tuskegee: understanding mistrust about research participation. J Health Care Poor Underserved. 2010;21(3):879-897. doi:10.1353/hpu.0.0323
- Patient-Centered Outcomes Research Institute (PCORI). Equity and Inclusion Guiding Engagement Principles. Available at: https://www.pcori.org/about/pcoris-advisory-panels/advisory-panel-patient-engagement/equity-and-inclusion-guiding-engagement-principles Published March 2021. Accessed February 15, 2022.
- Berkeley Media Studies Group. community engagement toolkit: a participatory action approach towards health equity and justice. Available at: http://www.bmsg.org/resources/publications/community-engagement-toolkit-a-participatory-action-approach-towards-health-equity-and-justice/. Accessed July 10, 2022.
- Noel L, Phillips F, Tossas-Milligan K, et al. Community-Academic Partnerships: Approaches to Engagement. Am Soc Clin Oncol Educ Book. 2019;39:88-95. doi:10.1200/EDBK_246229
- Scripps Translational Science Institute. Scripps Whittier Diabetes Institute. Toolbox for Conducting Community-Engaged Research. Available at: https://www.scripps.edu/_files/pdfs/science-medicine/translational-institute/community-engagement/training-and-tools/Community_Engaged_Research_Toolbox.pdf. Accessed March 12, 2022
- Wolff M, Maurana CA. Building effective community-academic partnerships to improve health: a qualitative study of perspectives from communities [published correction appears in Acad Med 2001 Dec;76(12):1231]. Acad Med. 2001;76(2):166-172. doi:10.1097/00001888-200102000-00016.
- Anderson EE. CIRTification: Community Involvement in Research Training. Facilitator Manual. Center for Clinical and Translational Science. University of Illinois at Chicago. 2011. Available at: go.uic.edu/CIRTification
- Mokos, J.T. Engaging the complexities of community: conflict and difference in community-engaged research. GeoJournal (2021). https://doi.org/10.1007/s10708-021-10397-3