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, the Centre for Social Research in Health established a Community Reference Panel (the ‘Panel’). 

The Community Reference Panel is supported by a grant from UNSW Research Infrastructure and the Kirby Institute.

 

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 provide advice and feedback from their perspective as people similar to those that may be recruited to participate in a project.

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.

We are always recruiting members to the Panel. Depending on the nature of the research, and characteristics and experience important to providing input, a sub-group of the Panel are invited to participate in a consultation process for a specific project. Panel members are provided with $40 for each consultation.

The Panel Coordinators are:

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

Assistance has also been provided by Jessica Russ-Smith, who is a PhD candidate at UNSW.

Melinda, Jessica and Kim were referred for the role by Nura Gili at UNSW.

The Panel operates entirely independently from the researchers. The Panel Coordinators are responsible for all aspects of the facilitating the Panel including:

  • Making initial contact and extending an invite to Panel members to participate for a specific project
  • Providing study information for review by Panel members
  • Arranging consultations with Panel members. These will typically be conducted via phone, depending on availability and location of the members, and arranged to suit members.
  • Reporting results of consultations and feedback provided by the Panel Members to researchers

Following initial approach and scoping involving the researchers and Panel Coordinators, an agreement is reached between the researcher and the Panel Coordinators or the Director of CSRH, documenting the involvement of the Panel in providing community input and control for each specific study. 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, or could be 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.

Panel sub-group

The sub-group selected for a project will normally remain in place for the lifetime of the project for which it is engaged. The sub-group can provide ongoing review over the project’s lifespan. However, members are free to withdraw from participation at any time. If members withdraw or are unavailable for specific consultations, the Panel Coordinators will endeavour to invite additional community members to participate.

A key role of the Panel is to support Aboriginal community control for projects impacting Indigenous people by providing a mechanism for community consultation. The Panel will advise on aspects of proposed research, including the design and conduct of the research, ownership of data, interpretation of data, and the reporting and publication of findings from research affecting the health of Aboriginal people.

Key topics on which input can be sought include:

  • The net benefit as well as (identified and unidentified) risks of the 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.

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