Table of Contents

  • Appendix A: Patient & Public Group Coordinator Job Description
  • Appendix B: Training & Reading Materials
  • Appendix C: Project Plan Worksheet
  • Appendix D: Budget Worksheet
  • Appendix E: Ethics Exemption Worksheet
  • Appendix F: Memorandum of Understanding
  • Appendix G: Research Collaboration Agreement
  • Appendix H: Honoraria and Expenses Policy
  • Appendix I: Social Media & Marketing Strategy
  • Appendix J: Social Media & Marketing Worksheet
  • Appendix K: Member Recruitment & Selection Strategy
  • Appendix L: My Involvement Profile Template
  • Appendix M: Terms of Reference Template
  • Appendix N: First Meeting Agenda
  • Appendix O: Request Form & Application Information
  • Appendix P: Master Log Template

 

    

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Training & Reading Materials

Published Articles & Reviews

Tolppa, T., Hussaini, A., Ahmed, N. et al. (2024) Establishment of a patient and public involvement and engagement group to support clinical trials in Pakistan: Initial lessons learned.
Hussaini, A., Ahmed, N., Ahmed, M. J., Hashmi, M., Tolppa, T. (2025). Patient and public involvement and engagement in critical care research in low- and middle-income countries: Challenges and solutions.
Richards, T., Montori, V. M., Godlee, F., Lapsley, P., & Paul, D. (2013). Let the patient revolution begin.
Domecq, J.P., Prutsky, G., Elraiyah, T. et al. (2014). Patient engagement in research: A systematic review.
Cook, N., Siddiqi, N., Twiddy, M., & Kenyon, R. (2019). Patient and public involvement in health research in low and middle-income countries: A systematic review.
Hoekstra, F., Mrklas, K.J., Khan, M. et al. (2020). A review of reviews on principles, strategies, outcomes and impacts of research partnerships approaches.
Heckert, A., Forsythe, L. P., Carman, K. L. et al. (2020). Researchers, patients, and other stakeholders' perspectives on challenges to and strategies for engagement.
Dudley, L., Gamble, C., Preston, J., Buck, D., EPIC Patient Advisory Group, Hanley, B. et al. (2015). What difference does patient and public involvement make and what are its pathways to impact?
Dickert, N. W., Bernard, A. M., Brabson, J. M., Hunter, R. J., McLemore, R., Mitchell, A. R., … D. Pentz, R. (2020). Partnering with patients to bridge gaps in consent for acute care research.
Tindana, P. O., Singh, J. A., Tracy, C. S., et al. (2007). Grand challenges in global health: Community engagement in research in developing countries.

Frameworks, Toolkits, & Practical Guides

Mesh Guide: Setting Up an Advisory/Involvement Group
Ludwig Boltzmann Gesellschaft (2019). Patient and Public Involvement and Engagement in Research: A “How to” Guide for Researchers.
MRC Clinical Trials Unit at UCL. Patient and Public Involvement (PPI) Resources.
ACT Patient Engagement Committee. (2024, Fall). Summary of patient engagement resources.
Public Engagement in Data Research Initiative (PEDRI). (2025). PEDRI Good Practice Standards for Public Involvement and Engagement in Data for Research and Statistics.
PCORI. (2020). Engagement Rubric for Applicants.
WHO. (2023). Framework for meaningful engagement.
PPIE Toolkit Appendix B – Working Copy (Google Doc)

Educational & Training Resources

University of Alberta, School of Public Health. (2020). SPH 566 Special Seminars: Fundamentals of Patient-Oriented Research.
National Co-ordinating Centre for Public Engagement (2018). What Works: Engaging the Public Through Social Media.
Global Health Network (TGHN). (2024). Community Engagement and Involvement in Health Research: An Introduction and Practical Guide.
Global Health Social Science (2024). Social Sciences Sessions – Session 5 [Introducing focus group discussions] and Session 8 [Using participatory methods in health research].

Reporting & Evaluation Standards

Staniszewska, S., Brett, J., Simera, I., Seers, K., Mockford, C., Goodlad, S., et al. (2017). GRIPP2 reporting checklists: Tools to improve reporting of patient and public involvement in research.
NIHR. (2019). UK Standards for Public Involvement in Research.
CIOMS. (2016). International ethical guidelines for health-related research involving humans.

Principles & Reflections on Involvement

Lefton, V., & Fleming, A. (2024). Launching the Lived Experience in Policymaking Guide: Reflections on the principles, behaviours, and mindsets that underpin lived experience work.
Shangase, P. Z., Gachago, D., & Ivala, E. N. (Eds.). (2023). Co-teaching and co-research in contexts of inequality: Using networked learning to connect Africa and the world.