Good Participatory Practice (GPP) guidelines provide a blueprint for engaging patients, caregivers, and community members in research. The GPP guidelines were originally developed for HIV prevention clinical trials but are now used across multiple disease areas.
Following GPP is one way to conduct research that is important to the community, and they give researchers an opportunity to better align their ideas with community values. GPP guidelines also provide a framework for navigating questions and concerns if they occur during a research study.
Stage(s) of Research Process:
- Study Planning: The GPP guidelines include examples of how to understand the ideas and customs of communities, identify ways to communicate with the community, and how to work with community members to make research decisions.
- Study Conduct: The GPP guidelines help researchers plan for managing any obstacles experienced during the research study. Some of these recommendations include identifying a community member who can advise on solutions, keeping clear records of the study, and tracking the team’s responses to any problems.
- Post-Study: The GPP guidelines provide suggestions for advertising the trial and for sharing the results after the trial is finished. Some of these recommendations include identifying community members who can help communicate study results, determining the preferred ways community members want to learn about the study, and planning for post-study communication at the beginning of the research project.
Who Might Benefit:
- Researchers
- Can use the GPP guidelines to better understand how to engage communities in research that is important to them and to determine if their approach was successful.
- Can use the online course available on the GPP website to learn about the guidelines and how to use them in their research.
- Patients, Caregivers, Patient Advocacy Groups, and Communities may use the guidelines to hold researchers and research institutions accountable for good community engagement or implement parts of the guidelines directly.
Key Takeaways and Examples in Practice:
- GPP describes a process for building trust between research teams and communities. This increased trust improves trial design, understanding of trial results, and how they are applied.
- One example of how the GPP improves research is seen in work done by the CAPRISA research center in South Africa. The CAPRISA research center provides ongoing support to the community including local schools, and this support has increased trust by the community who then provide honest feedback on what community members think about research and if they will participate.
- A second example of the GPP improving research is seen in a clinical trial to test a new drug from Gilead to prevent HIV infection. The study team created new ways for community members to provide input on the trial, and the study protocol was modified to accommodate their recommendations.
- A third example of GPP in research is seen in the NIAID Microbicide Trials Network’s study of a rectal microbicide. Through a collaborative consultation process that built trust within communities, they saw improved study participation, adherence, and results.
This work was done with the direct support by each of the following partners who advance this work:
- AVAC
- UNAIDS
Keywords: Collaborative Decision-Making; Methods of Engagement; Return of Research Value; Researchers, Patients, Caregivers, and Patient Advocacy Groups; Communities
Links to Relevant Resources:
- Good Participatory Practice Website
- Good Participatory Practice: Guidelines for Biomedical HIV Prevention Trials (English)
- Good Participatory Practice Guidelines on UNAIDS Website
- Online Course Introducing Good Participatory Practice
- Good Participatory Practice: Evidence of Success
Definitions for each engagement objective can be found in the glossary.