We have developed a range of methods for consumer and community involvement. Click on each method heading below for a short explanation and example to see how these methods can be adapted to suit the needs of the particular research 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 applying for funding.
- Grant applications: You 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.
You can attend one-off or occasional community consultations and forums. 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. You may also be offered opportunities for further involvement in the research project.
You may apply to join a research team as a community representative. Where possible there will be at least two community representatives on the team. As part of the research team you 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 provide a link between the researcher and the community. As a research buddy you 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. As a research buddy you 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 bring together a number of consumers and community members to provide advice on a specific project or program of research. As a member of a research group you might be asked to provide advice about:
- How the research is being planned
- Getting the research results out to the community
- Documents that will be given to participants in the project.
Reference groups will 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 secure Facebook page.
As a member of a steering group you will help to steer the research. 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.
You might be asked 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
You should be offered training on how to perform the task you have been asked to do.
Consumer and Community Advisory Councils provide input at an organisation level rather than to research project. Council membership usually includes consumers, community members, researchers and management.
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.