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We promote the community ‘voice’ in health research.

Ways to be involved

There are many ways to have your say about research. Within the Involvement Program we call these methods of involvement. Each method is described below as guidance. Methods are adapted to suit the needs of the project and the people involved in the project.

Writing or commenting on documents

You can be involved in writing or commenting on a variety of documents used within research projects. It is important that they are easily understood by consumers and community members. Commonly used documents include:

  • Information sheets
    Written information for participants about 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.

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Grant application reviewers

You can be involved in reviewing grant or funding applications. Organisations such as Cancer Council NSW and Cancer Australia involve members of the community in their research grant allocation process. Cancer Council WA is currently establishing ways to fully involve the community in their research funding processes.

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Consumer and community forums

You can attend one-off or occasional community consultations and forums. Forums bring together a group of community members and researchers. You are asked to provide input about a specific topic or research project. Input might include priorities for new services or research projects. You may be offered opportunities for further involvement in the research project.

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Consumers and community members on teams

You may be asked 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 have input into how the research is carried out.

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Research buddies

Research buddies act as a link between the researcher and the community.

As a research buddy you will meet regularly with researchers from 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 might use their lived experience to help the researcher:

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

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Reference groups

Reference groups bring together a number of consumers and community members to provide advice to 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 into the community
  • Documents that will be given to participants in the project

Reference groups will meet 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.

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Steering group or panel

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.

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Consumer or community researchers

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 in how to perform the task you have been asked to do.

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Consumer and Community Advisory Councils

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

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Upcoming Events and Training

See all upcoming events and training