Skip to content

A Penn State Nittany Lion statue is seen in the courtyard of Penn State College of Medicine in Summer 2016. The statue is in focus toward the right side of the image. Out of focus in the background, green plants and trees are visible in the courtyard.

Section 8: Appendix

Appendix A: PCORI’s Engagement Rubric

Appendix B: PCORI’s Equity and Inclusion Guiding Engagement Principles

Appendix C: Additional Funding Sources

Appendix D: Example Targeted Stakeholder Agenda [DOC download]

Appendix E: Example Study Newsletter [PDF download]

Appendix F:

Appendix G: Example Visual Abstract [PDF download]

Appendix H: Example Closing the Feedback Loop [DOC download]

Appendix I: Example Stakeholder Charter [DOC download]

Appendix J: Example Memorandum of Understanding [PDF download]

Jump to topic

Search

References

  1. Goodman, M. S., & Sanders Thompson, V. L. (2017). The science of stakeholder engagement in research: classification, implementation, and evaluation. Transl Behav Med, 7(3), 486-491. doi:10.1007/s13142-017-0495-z
  2. 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.
  3. Centers for Disease Control and Preventions. Principles of community engagement. (1st edition). Atlanta (GA): CDC/ATSDR Committee on Community Engagement; 1997.
  4. Wallerstein NB, Duran B. Using community-based participatory research to address health disparities. Health Promot Pract. 2006;7(3):312-323. doi:10.1177/1524839906289376
  5. Suarez-Balcazar Y, Francisco VT, Rubén Chávez N. Applying Community-Based Participatory Approaches to Addressing Health Disparities and Promoting Health Equity. Am J Community Psychol. 2020;66(3-4):217-221. doi:10.1002/ajcp.12487
  6. Suarez-Balcazar Y. Meaningful Engagement in Research: Community Residents as Co-creators of Knowledge. Am J Community Psychol. 2020;65(3-4):261-271. doi:10.1002/ajcp.12414
  7. Forsythe L, Heckert A, Margolis MK, Schrandt S, Frank L. Methods and impact of engagement in research, from theory to practice and back again: early findings from the Patient-Centered Outcomes Research Institute. Qual Life Res. 2018;27(1):17-31. doi:10.1007/s11136-017-1581-x
  8. Forsythe LP, Frank LB, Workman TA, Hilliard T, Harwell D, Fayish L. Patient, caregiver and clinician views on engagement in comparative effectiveness research. J Comp Eff Res. 2017;6(3):231-244. doi:10.2217/cer-2016-0062
  9. 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
  10. Eder MM, Evans E, Funes M, et al. Defining and Measuring Community Engagement and Community-Engaged Research: Clinical and Translational Science Institutional Practices. Prog Community Health Partnersh. 2018;12(2):145-156. doi:10.1353/cpr.2018.0034
  11. 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. https://consult.ucsf.edu/guidance/community-engaged-research. Accessed February 14, 2022.
  12. 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
  13. 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
  14. 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.
  15. Viswanathan M, Ammerman A, Eng E, Gartlehner G, Lohr KN, Griffith D, et al Community-based participatory research: assessing the evidence. AHRQ Publication No 04-E022-2 Rockville (MD): Agency for Healthcare Research and Quality; 20
  16. Anderson EE. CIRTification: Community Involvement in Research Training. Facilitator Manual. Center for Clinical and Translational Science. University of Illinois at Chicago. 2011. Available at: ccts.uic.edu/tools/cirtification
  17. Miller, B. Community Engagement/Health Disparities: How Researchers Can Combat Racism, Health Inequities. Duke University School of Medicine. https://medschool.duke.edu/news/community-engagementhealth-disparities-how-researchers-can-combat-racism-health-inequities. Published February 10, 2022. Accessed April 25, 2022.
  18. 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.
  19. 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.
  20. 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.
  21. Alter, Driver, Frumento, Howard, Shufstall and Whitmer (2017), Community engagement for collective action: a handbook for practitioners. Invasive Animals CRC, Australia.
  22. 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
  23. 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
  24. 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
  25. Kost RG, Leinberger-Jabari A, Evering TH, et al. Helping Basic Scientists Engage With Community Partners to Enrich and Accelerate Translational Research. Acad Med. 2017;92(3):374-379. doi:10.1097/ACM.0000000000001200
  26. Jones WS, Mulder H, Wruck LM, et al. Comparative Effectiveness of Aspirin Dosing in Cardiovascular Disease. N Engl J Med. 2021;384(21):1981-1990. doi:10.1056/NEJMoa2102137
  27. Sekhar DL, Pattison KL, Confair A, et al. Effectiveness of Universal School-Based Screening vs Targeted Screening for Major Depressive Disorder Among Adolescents: A Trial Protocol for the Screening in High Schools to Identify, Evaluate, and Lower Depression (SHIELD) Randomized Clinical Trial. JAMA Netw Open. 2019;2(11):e1914427. Published 2019 Nov 1. doi:10.1001/jamanetworkopen.2019.14427
  28. George DR, Snyder B, Van Scoy LJ, et al. Perceptions of Diseases of Despair by Members of Rural and Urban High-Prevalence Communities: A Qualitative Study. JAMA Netw Open. 2021;4(7):e2118134. Published 2021 Jul 1. doi:10.1001/jamanetworkopen.2021.18134
  29. Poger JM, Yeh HC, Bryce CL, et al. PaTH to partnership in stakeholder-engaged research: A framework for stakeholder engagement in the PaTH to Health Diabetes study. Healthc (Amst). 2020;8(1):100361. doi:10.1016/j.hjdsi.2019.05.001
  30. Patient-Centered Outcomes Research Institute (PCORI). About PCORI. Why PCORI was created. Available at: https://www.pcori.org/about/about-pcori. Accessed April 11, 2022
  31. Centers for Disease Control and Prevention. Mission, Role and Pledge. Available at: https://www.cdc.gov/about/organization/mission.htm. Accessed February 23, 2022.
  32. 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.
  33. 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.
  34. Israel B, Eng E, Schulz AJ, & Parker EA. [eds]. (2005). Methods in Community-Based Participatory Research for Health. foreword by David Satcher, Jossey-Bass, San Francisco, CA.
  35. Wu J, Rajesh A, Huang YN, et al. Virtual meetings promise to eliminate geographical and administrative barriers and increase accessibility, diversity and inclusivity. Nat Biotechnol. 2022;40(1):133-137. doi:10.1038/s41587-021-01176-z
  36. Sarabipour S, Khan A, Seah YFS, et al. Changing scientific meetings for the better. Nat Hum Behav. 2021;5(3):296-300. doi:10.1038/s41562-021-01067-y
  37. Poger JM, Murray AE, Schoettler EA, Marin ES, Aumiller BB, Kraschnewski JL. Enhancing community engagement in Patient-Centered Outcomes Research: Equipping learners to thrive in translational efforts. JCTS. 2021;5(1):e172. doi:10.1017/cts.2021.835
  38. Ibrahim AM. “Seeing is Believing: Using Visual Abstracts to Disseminate Scientific Research.” Am J Gastroenterol. 2017 Sep 19.
  39. Cunningham-Erves J, Mayo-Gamble T, Vaughn Y, et al. Engagement of community stakeholders to develop a framework to guide research dissemination to communities. Health Expect. 2020;23(4):958-968. doi:10.1111/hex.13076
  40. Centers for Disease Control and Prevention Prevention Research Centers: Evaluation results: Program context. Atlanta (GA): Centers for Disease Control and Prevention; 2009 Retrieved from http://www cdc gov/prc/pdf/ esfall2009-full pdf
  41. Israel BA, Shulz AJ, Parker EA, Becker AB Review of community-based research: Assessing partnership approaches to improve public health. Annual Review of Public Health 1998;19:173-202.
  42. Gesell SB, Halladay JR, Mettam LH, Sissine ME, Staplefoote-Boynton BL, Duncan PW. Using REDCap to track stakeholder engagement: A time-saving tool for PCORI-funded studies. J Clin Transl Sci. 2020;4(2):108-114. Published 2020 Feb 6. doi:10.1017/cts.2019.444
  43. Ross LF, Loup A, Nelson RM, Botkin JR, Kost R, Smith GR, Gehlert S. The challenges of collaboration for academic and community partners in a research partnership: points to consider. J Empir Res Hum Res Ethics. 2010 Mar;5(1):19-31. doi: 10.1525/jer.2010.5.1.19. PMID: 20235861; PMCID: PMC2946316.
  44. Anderson EE, Valadares KJ. Introduction: Community-Academic Partnerships in Research and Public Health. Narrat Inq Bioeth. 2017;7(1):1-4. doi:10.1353/nib.2017.0001
  45. Anderson EE, Solomon S, Heitman E, et al. Research ethics education for community-engaged research: a review and research agenda. J Empir Res Hum Res Ethics. 2012;7(2):3-19. doi:10.1525/jer.2012.7.2.3
  46. Hahn DL, Hoffmann AE, Felzien M, LeMaster JW, Xu J, Fagnan LJ. Tokenism in patient engagement. Fam Pract. 2017;34(3):290-295. doi:10.1093/fampra/cmw097