Authors: Timo Tolppa, Phaik Yeong Cheah, Noni Mumba and Alun Davies.

January 2025

This guide has been prepared and reviewed by engagement practitioners/researchers who have vast experience of initiating and implementing a wide range of Community Advisory Boards, Patient and Public Involvement and Engagement groups and Young persons Advisory Groups.

It aims at providing researchers with a guide, with access to resources, for establishing an ‘advisory/involvement group.’  These groups vary tremendously depending on the purpose. In this roadmap ‘advisory/involvement group’ is an umbrella term describing a group comprising patients, community members, leaders or young people—who work with health researchers to make research studies more meaningful and useful. They share their experiences and ideas to help ensure the research focuses on real needs, is done ethically, and leads to results that benefit everyone involved. These groups help build trust and improve how research makes a difference in people’s lives. The groups comprise Community Advisory Boards (CABs), Patient and Public Involvement (PPI) Groups, Young Persons Advisory Groups (YPAGs), and other variations. They can vary in terms of membership composition depending on the type of research they contribute to and/or their function.

Guiding Principles

What guiding core values and principles should you think about when establishing an advisory/involvement group

Group functions

The roles and functions of an advisory/involvement group may vary tremendously. Read about some possible functions here

How can researchers be 'responsive to advisory/involvement groups?

Learn about different ways of responding to views, concerns and suggestions.

Steps for setting up an advisory/involvement group

Explore six foundational steps to establishing and implementing an advisory/involvement group

Types of advisory/involvement groups

  • A Research Programme CAB – may comprise diverse representation of the local community and may be involved in various research studies.
  • A vaccine trial CAB – may be funded for a single clinical trial with its composition reflecting the general population of the trial location.
  • A PPI group for a cancer treatment clinical trial – may comprise patients who have lived experience of the type of cancer being studied.
  • A YPAG for a school-based health intervention study may comprise students and/or teachers.
  • An advisory group for a hospital-based study on hospital intensive care unit staff management may comprise nurses, doctors, and managers.

 Download PDF | DOI: https://doi.org/10.48060/tghn.159