Read about how CCHRN are working to involve consumers in COVID-19 research and find out how you can contribute

We promote the community ‘voice’ in health research.

Our methods of involvement

We have developed a range of methods for consumer and community involvement. Following is a short explanation of each of these methods which can be adapted to suit the needs of your research project.  Click the title of each method for more explanation and practical examples.

Document reviewers

It is important for consumers or community members to understand the information contained in documents associated with your project. Involving consumer or community members in reviewing information sheets, consent forms or plain language summaries ensures that documents are easily understood by everyone. It can also be very helpful in ‘detecting’ jargon and acronyms. Commonly used documents include:

  • Information sheets
    Written information for participants that explains the research project
  • Consent forms
    A form signed by a research participant to confirm agreement to take part in a project. It also provides evidence that the participant fully understands what they are being asked to do in the research
  • Plain language summaries
    These are summaries of the research written in plain language. They can be used to let the community know about the research or for applying for funding.
  • Grant applications
    Consumers or community members can be involved in reviewing grant or funding applications. Organisations such as Cancer Council WA, Cancer Australia and Perth Children’s Hospital Foundation involve members of the community in their research grant schemes.

Consumer and community forums

These are one-off or occasional meetings between consumers, community members and researchers to discuss your research and its results. These events bring together a group of community members to seek information about a specific topic or research project. This might include priorities for new services or research projects.

Consumer and community members in research teams

Consumer or community members who are part of research teams are commonly referred to as consumer or community representatives.  Where possible there will be at least two community representatives on the team. As part of the research team consumer and community members will attend meetings and may provide advice about: research priorities; how the research is carried out; analysing the results; and getting information back to the community.

Research buddies

Research buddies provide a link between the researcher and the community. Research buddies will meet semi-regularly with the research team to discuss the research and its results. The researcher may do this over the phone or face to face. Some researchers have little or no contact with people affected by the condition they are studying. Research buddies can help to provide that link. Research buddies can use their lived experiences to help the researcher:

  • Understand results that they cannot explain
  • Raise awareness of the research
  • Explain their research to the community in plain language

Reference groups

Reference groups bring together a number of consumers and community members to provide advice on a specific project or program of research. Reference group members might be asked to provide advice about:

  • How the research is being planned
  • Getting the research results out into the community
  • Documents that will be given to participants in the project

Reference groups meet formally a number of times throughout the research project or program. Meetings may be face-to-face or they might be by phone or via a secure Facebook page.

Steering group or panel

Group of stakeholders who steer and influence the research project. Steering groups have more influence and involvement than a reference group, which only provides advice. Steering groups usually have other stakeholders as well as consumers and community members.

Consumer and community researchers

These are consumers or community members who have been trained to undertake part of the research as a consumer or community researcher.  This might include:

  • Interviewing other consumers or community members
  • Helping to run focus groups
  • Analysing results of interviews or questionnaires.

Consumer and Community Advisory Councils

Consumer and Community Advisory Councils provide input at an organisation level rather than to research projects. Council membership usually includes consumers, community members, researchers and management.

Priority Setting Partnerships

Priority setting partnerships are designed to seek information from consumers, community members and other end users of research i.e. health professionals, service providers, about their priorities for future research. This method includes surveying people for their priorities and holding a consensus workshop to decide on the top priorities. It is based on the UK’s James Lind Alliance Priority Setting Partnership Process.

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