Appendix A: PCORI’s Engagement Rubric
Appendix C: Additional Funding Sources
- Aetna Foundation
- Agency for Healthcare Research and Quality (AHRQ)
- American Psychological Foundation Wayne F. Placek Grants
- Center for Rural Pennsylvania
- The Commonwealth Fund
- Pennsylvania Department of Health
- Disability and Rehabilitation Research Projects (DRRP) Program
- Ford Foundation
- The Foundation Center’s “Philanthropy News Digest”
- GLMA Lesbian Health Fund
- Jacobs Foundation Research Fellowships
- The Joyce Foundation
- Paralyzed Veterans of America Research Foundation
- Point Foundation LGBT Scholarships
- Robert Wood Johnson Foundation Research, Evaluation, and Learning Grants
- The Society for the Psychological Study of Social Issues – The Clara Mayo Grants
- William T Grant Foundation Funding
- William T Grant Foundation: Reducing Inequality
- The Williams Institute Small Research Grants
Appendix D: Example Targeted Stakeholder Agenda [DOC download]
Appendix E: Example Study Newsletter [PDF download]
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
- 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
- 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.
- Centers for Disease Control and Preventions. Principles of community engagement. (1st edition). Atlanta (GA): CDC/ATSDR Committee on Community Engagement; 1997.
- 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
- 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
- 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
- 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
- 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
- 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
- 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
- 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.
- 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
- 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
- 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.
- 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
- 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
- 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.
- 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.
- 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.
- 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.
- Alter, Driver, Frumento, Howard, Shufstall and Whitmer (2017), Community engagement for collective action: a handbook for practitioners. Invasive Animals CRC, Australia.
- 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
- 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
- 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
- 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
- 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
- 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
- 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
- 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
- Centers for Disease Control and Prevention. Mission, Role and Pledge. Available at: https://www.cdc.gov/about/organization/mission.htm. Accessed February 23, 2022.
- 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.
- 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.
- 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
- 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
- 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
- Ibrahim AM. “Seeing is Believing: Using Visual Abstracts to Disseminate Scientific Research.” Am J Gastroenterol. 2017 Sep 19.
- 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
- 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
- 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.
- 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
- 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.
- 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
- 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
- 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