Module 5

Committees and Groups

Establishing consumer and community involvement committees and advisory groups

Strategies for including consumers on an established project or steering committee

Some examples of the best approach for committees with consumer advisors as noted by the Consumer Health Forum and the Alberta SPOR (Strategy for Patient Oriented Research) Unit include:

  • Have multiple rather than a single consumer. A second consumer can offer alliance and support as well as continue to contribute a consumer perspective if one consumer needs to leave the committee. However, one consumer voice is better than no consumer voice.
  • Provide the consumer with information about the project, purpose of the committee, people on the committee and their role (photos can be helpful)
  • Ensure the Chair of the Committee meets the consumer/s before the meeting
  • The chair may need to assist consumers in advocating their perspective
  • Treat consumers as an equal member of the committee
  • Ensure the consumer is heard, listened to, and understood by the rest of the committee
  • Ensure jargon and acronyms are kept to a minimum or explained
  • Provide consumers with all relevant information and an agenda before the meeting and take into consideration any special requirements the consumer representative may have
  • Ensure consumers feel able and safe to disagree with the rest of the committee and have this recorded
  • Consider that some consumers may need training to fully participate in a committee.
A word on consumer ‘representativeness’...

The inclusion of consumers in research and healthcare improvement projects is not to ‘represent’ the perspective of all consumers. Consumers offer their personal experience and view the research/project from a different lens to health professionals and researchers. It can be helpful to a committee to have multiple consumer perspectives, and some committees will rotate consumers to ensure they gain diverse viewpoints.

Sometimes consumers are in contact with many other consumers, and are able to incorporate their perspectives into their viewpoint. A single consumer, however, will never be able to ‘represent’ a group of consumers.

In the following video, Dr Virginia Vandall-Walker, clarifies the concept of 'representativeness'.

Establishing a Consumer and Community Involvement committee or advisory group from scratch

Consumer Advisory Committees (such as a reference group or consumer council) can be set up for an organisation, institute or project. The committee can assist researchers and health services by providing strategic advice on projects and research matters from a consumer perspective. A number of guides, publications and general strategic advice exist regarding how to set up and partner with consumer advisory committees.

All consumer and community involvement committees and consumer advisory groups should have Terms of Reference (TOR). TOR clearly state the purpose and structure of a committee, its objectives and scope, roles and responsibilities, what membership involves, as well as outline conflict of interest and confidentiality descriptions.

In the following video, Dr Magdalena Skrybant, describes how to set up a consumer and community involvement group.

Here you will find some useful resources.

The inclusion of consumers in research and healthcare improvement projects is not to ‘represent’ the perspective of all consumers. Consumers offer their unique knowledge and lived experience of the health condition.
Dr Virginia

Victoria State Government, Community advisory committee guidelines

The Association of Participating Service Users (APSU), is a Victorian consumer representative body set up to enable people who use alcohol and other drug services to contribute to policy development, research, service provision. The association has published a document on ‘Six Steps to Developing Your Own Consumer Advisory Committee.’