Community Reference Panel

The quality of research is improved when people with lived experience are involved.

Community participation in the research process also helps to make the research relevant and useful for the community. This involves community input into research objectives and design, measures used to collect data, and issues of consent and confidentiality.

To provide direct community input to the research process, we established a Community Reference Panel (the ‘Panel’). 

About the panel

The Panel consists of community members who can provide comment and feedback on research drawing on their personal experiences.

Two sub-panels have been developed:

  1. People with lived experience of incarceration, drug use, drug treatment, sex work or diagnosis with hepatitis C
  2. People with lived experience of disability

A key aim of the Panel is to involve Indigenous Australians. We aim to maintain at least a quarter of Panel membership with people identifying as Indigenous.

Panel members can be consulted about various aspects of a research project, including decisions around research questions, data collection instruments, information statements, interpretation of findings and results. Indigenous members of the Panel can also be consulted about specific issues related to conducting research with and for Indigenous people.

Panel members are not affiliated in any way with UNSW and are provided with $40 for each consultation.

Panel members may be asked to provide feedback on issues important to their community by:

  • Reviewing hardcopy information
  • Melinda Walker is an Aboriginal woman from Bowraville NSW and a social work student at UNSW.
  • Kim Beadman is an Aboriginal woman from La Perouse and is a psychology/criminology student at UNSW.
  • Steve Griffin has been providing advice on expanding the panel to include people with a lived experience of disability.

Panel Coordinators are responsible for all aspects of facilitating the Panel including:

  • Making initial contact and extending an invitation to Panel members to participate for a specific project
  • Providing hardcopy study information for review by Panel members
  • Arranging consultations with Panel members
  • Reporting results of consultations and feedback provided by the Panel to researchers

A key role of the Panel is to support Aboriginal community control for projects impacting Indigenous people by seeking feedback on:

  • The net benefit and risks of research to the health of Aboriginal people and communities
  • Whether the proposed study procedures, interventions, data collection, and information provided to participants are sensitive to the cultural principles of Aboriginal society
  • Opportunities that will enhance the skills and knowledge of Aboriginal people, communities and organisations that are participating in the project
  • The process for collection of biological samples for future research and genetic testing
  • The appropriateness of data collected and used in analyses, including issues of privacy and confidentiality
  • Issues with sufficient community control over the research
  • Review of research findings, and advice on publication and dissemination of findings.

For projects in which over-representation of Indigenous people is expected, at least half of those selected for consultation will include Indigenous people.

Following initial discussions about the research project, an agreement is signed documenting the involvement of the Panel. The Panel Coordinators then select suitable members based on the nature of the research, and contact the members to invite their involvement for that study.

Depending on the study duration, the involvement of the members may be limited to one consultation, but is typically carried out over a series of consultations and can be on an ongoing basis throughout the project. The consultations will be semi-structured, with topics customised to each study according to the research objectives, procedures and target population. Consultations will typically be conducted via phone, following provision of printed material to members for advance review.

The panel provides a means to undertake consultation with people with lived experience relevant to a research project. There are other aspects of ethical practice, particularly community control of Indigenous research, which should be followed.

Typically, projects also benefit from an advisory group that can provide other input and support research project governance processes. This group might include health and other service providers, and community advocates.

Some key organisations that can provide expertise in areas of research related to this panel include:

Two guidelines are available from the NHMRC regarding research with Aboriginal people. The Aboriginal Health and Medical Research Council of NSW operates an ethics committee and provides guidance for researchers in relation to requirements on the AHMRC website