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Section 8: Appendix

Appendix A: Community Partner Spotlights in Study Newsletters [PDF download]

Appendix B: Example Memorandum of Understanding [PDF download]

Appendix C: “Preparing for Research Worksheet” designed by the University of Illinois at Chicago Center for Clinical and Translational Science [PDF download]

Appendix D: Glossary of Terms [PDF download]

Appendix E: FAQ’s [PDF download]

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References

  1. 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.
  2. 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.
  3. Bureau of Labor Statistics, U.S. Department of Labor, Occupational Outlook Handbook, Medical Scientists. Accessed May 19, 2022. Available at https://www.bls.gov/ooh/life-physical-and-social-science/medical-scientists.htm. Accessed May 25, 2022.
  4. 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.
  5. Liu P, Astudillo K, Velez D, Kelley L, Cobbs-Lomax D, & Spatz E. S. (2020). Use of mobile health applications in low-income populations: a prospective study of facilitators and barriers. Circulation: Cardiovascular Quality and Outcomes, 13(9), e007031.
  6. 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
  7. Centers for Disease Control and Prevention Principles of community engagement (1st ed) Atlanta (GA): CDC/ATSDR Committee on Community Engagement; 1997.
  8. 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
  9. Alter, Driver, Frumento, Howard, Shufstall and Whitmer (2017), Community Engagement for Collective Action: A Handbook for Practitioners. Invasive Animals CRC, Australia.
  10. 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
  11. 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
  12. 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.
  13. 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
  14. Sheridan S, Schrandt S, Forsythe L, Hilliard TS, Paez KA; Advisory Panel on Patient Engagement (2013 inaugural panel). The PCORI Engagement Rubric: Promising Practices for Partnering in Research. Ann Fam Med. 2017;15(2):165-170. doi:10.1370/afm.2042
  15. 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.
  16. 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.
  17. 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
  18. 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.
  19. 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.
  20. 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
  21. 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
  22. 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
  23. 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.
  24. 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.
  25. 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
  26. Rice, Todd, The Historical, Ethical, and Legal Background of Human Subjects Research, Respiratory Care, October 2008; 53 (10): 1325-1329.
  27. Penn State College of Medicine Institutional Review Board/Human Research Protection Program Office (IRB/HRPP). Available at: https://www.research.psu.edu/irb. Accessed May 5, 2022.
  28. Selwitz, Ada Sue, Epley, Norma, and Erickson, Janelle. 2013. “Basic Institutional Review Board (IRB) Regulations and Review Process.” CITI Program, http://www.citiprogram.org.
  29. 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.
  30. Rice TW. The historical, ethical, and legal background of human-subjects research. Respir Care. 2008;53(10):1325-1329.
  31. 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.
  32. University of Nevada, Las Vegas. History of Research Ethics. Available at: https://www.unlv.edu/research/ORI-HSR/history-ethics. Accessed July 10, 2022.
  33. 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.
  34. 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
  35. 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.
  36. 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.
  37. 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
  38. 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
  39. 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.
  40. 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
  41. 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