In community-based research the involvement of communities or people who share a common experience or identity with the group being researched is of great importance. The involvement of these individuals, often referred to as “peers,” in research teams and processes is a common practice and, peers are increasingly hired into roles as “Peer Research Assistants” or “Community Research Associates.” Below are some resources for community-based research teams to use in applying this model.
PRINCIPLES THAT GUIDE THE INVOLVEMENT OF PEOPLE WITH LIVED EXPERIENCE IN RESEARCH:
- The GIPA/MIPA principles (Greater/Meaningful Involvement of People Living with HIV/AIDS) is an important pillar in HIV community-based research. This principle recognizes the rights and responsibilities of people living with HIV/AIDS (PHAs), including their right to self determination. Read the UNAIDS GIPA policy brief for an overview of the principle.
- The “Nothing About Us Without Us“ principles outline the greater, meaningful involvement of people who use illegal drugs in policy, research, and services/programs.
- OCAP principles (ownership, control, access and possession) are essential to consider when considering the involvement of Aboriginal people and communities in community based research.
SUPPORTING AND TRAINING PEER RESEARCHERS:
The Universities Without Walls eLearning for HIV– Created by the Ontario HIV Treatment Network, the UWW e-learning side guides you through the many facets of community-based research (CBR) using interactive educational modules to support the work of emerging HIV/AIDS research teams.
HIV CBR Ethics Fact Sheet #8: Supporting Peer Research Assistants (2014) – Fact sheet authored by Adrian Guta, Sarah Flicker, Robb Travers, Sarah Switzer, Vicky Bungay, Winston Husbands, Renée Masching, Jesse Thistle, and Catherine Worthington. Four key issues are addressed in this fact sheet: the benefits of a PRA approach, training PRAs, supporting PRAs, and planning for study closure.
Peer Research in Action: These working papers from the Wellesley Institute, Brenda Roche along with Sarah Flicker and Adrian Guta present Peer Research in Action in three parts: Models of Practice; Management, Support and Supervision; and, Ethical Issues.
CHIWOS Peer Researcher training guides: The Canadian HIV Women’s Sexual and Reproductive Health Cohort Study (CHIWOS) is a Canadian community-based research study that has hired peer researchers in British Columbia, Ontario, and Quebec and prioritizes the leadership and values the experiences of the diverse women who are themselves living with HIV. They have shared their PRA Training Manual and 4-Day PRA Training Facilitators’ Guides so that others may benefit from their work to develop tools that support and facilitate the involvement of peers in research.
Peer Research Associate Learning Modules: Created by the Dr. Peter Centre, the purpose of these modules is to to assist organizations navigate the process of recruiting, hiring, training, orientating, supervising, and mentoring peer researchers.
Peer Worker Support Project: Developing Industry Support Standards for Peer Workers Living with HIV: Created by Terry Howard, Director of Community-Based Research at Positive Living BC, this resource is a “living” document outlining support options for peer workers and those who employ them.
Inclusion Research Handbook: This resource was created by the Ontario Women’s Health Network and partners and discusses the background of Inclusion Research (research conducted by and for women who are marginalized) and provides a guide to conducting this form of community-based research. This tool includes an Inclusion Researcher training program manual and sample forms, documents and handouts.
CBR Tip Sheet – Compensating Peer Researchers: In community-based research, compensating people with lived experience to participate actively in the research process is a common practice. This document was developed by the Pacific AIDS Network with a provincial working group made up of members of the CBR Quarterly Meetings. It outlines some important considerations to take into account when developing compensation plans and policies for community-based research.
Payment for Involvement: A guide for making payments to members of the public actively involved in NHS, public health, and social care research (2010) – Guide published by Involve, an organization that supports greater public involvement in health research in the UK.