Consumer and community involvement in research is about the active involvement of consumers, community members and researchers working together to make decisions about health research priorities, policy and practice.
It is an active partnership that is sensitive to changing needs and priorities. It is about being part of the process as well as observing or commenting.
Fundamentally, it is a commitment to conducting research that is with the community rather than to or for the community.
This approach results in greater transparency, openness and accountability and research that is more relevant to the community.
Who are consumers and community members?
We use the definitions outlined below:
Refers to people who directly or indirectly make use of a health service e.g. patients.
The National Health and Medical Research Council uses the following definition: patients and potential patients, carers, and people who use health care services. Collectively, ‘consumers’ and ‘community members’ may be referred to as ‘the public’.
A member of a committee, steering group or similar who voices the consumer perspective.
The National Health and Medical Research Council uses the following definition: someone who is a member of a government, professional body, industry or non-government organisation or committees who voices consumer perspectives and takes part in the decision-making process on behalf of consumers. This person may be nominated by, and may be accountable to, an organisation of consumers. A consumer representative may be trained and supported to advocate for consumer-centred health care.
Families or friends providing unpaid care.
A group of people sharing a common interest but not necessarily a common geographic location. Different types of communities are likely to have different perspectives and approaches to their involvement in research.
An individual or group from within or outside the organisation who has a key interest in the research.
The National Health and Medical Research Council adds the following: this might include members of professional bodies, government or non-government agencies, industry or research funders as well as consumers and community members. Stakeholders can provide support or expertise and may influence decisions about the research and its findings.
The following definitions are also used by the National Health and Medical Research Council:
Health and medical research
Research with a human health focus.
An original investigation undertaken to gain knowledge, understanding and insight.
The planning, funding, conduct, of an individual piece of research in addition to implementation of research findings, publication of research findings.
A person who conducts research.
A place where research is conducted.