Community Reference Panel

The quality of research is improved when people with lived experience are part of conducting research. Community involvement in the research process also helps to make the research relevant and useful for the community. This involves community input into research objectives, design, and conduct including issues of consent, confidentiality and considerations specific to the study or population.

To provide direct community input into the research, the UNSW Centre for Social Research in Health (CSRH) has established a Community Reference Panel (the ‘Panel’) to review proposed research and provide ongoing advice and oversight of projects from conception to publication and dissemination of findings. While the Panel will be engaged for a wide variety of projects, a key role will be Aboriginal community control of research in projects impacting Indigenous people or communities. As outlined in the Aboriginal Health and Medical Research Council criteria, this includes projects in which:

  • The experience of Aboriginal people is an explicit focus of all or part of the research; or
  • Data collection is explicitly directed at Aboriginal peoples; or
  • Aboriginal peoples, as a group, are to be examined in the results; or
  • The information has an impact on one or more Aboriginal communities; or
  • Aboriginal health funds are a source of funding

In collaboration with the Social Policy Research Centre (SPRC), the panel has expanded to include people with a lived experience of disability.

The panel members can provide advice and feedback from their perspective as people like those who might be recruited to a project.

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:

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

Membership

CSRH is constantly recruiting members to the Panel. The Panel members are unaffiliated in any way with UNSW. 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.

A key aim of this panel is to involve Indigenous Australians.  We aim to maintain at least a quarter of the panel memberships as identifying as Indigenous.

Some ways the Panel members will be asked to participate include:

  • Reviewing hardcopy information provided in advance of arranged consultations.
  • Participating in planned consultations and providing feedback on the project and issues important to his/her community.

Panel Manager(s)

The Panel is managed by Melinda Walker and Kim Beadman. Melinda is an Aboriginal woman from Bowraville NSW and a social work student at UNSW. Kim is an Aboriginal woman from La Perouse and is a psychology/criminology student at UNSW. Assistance has also been provided by Jessica Russ-Smith who has recently completed her Honours degree in social work and will embark on a PhD in 2017. Melinda, Jess and Kim were referred for the role by Nura Gili at UNSW. Steve Griffin has been providing advice on expanding the panel to include people with a lived experience of disability.

The Panel operates entirely independently from the researchers. The Panel Manager(s) are responsible for all aspects of the facilitating the Panel including:

  • Making initial contact and extending an invitation to Panel Members participate for a specific project.
  • Providing hardcopy study information for review by panel members. Information will normally be posted in advance of each telephone consultation.
  • 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 to researchers.

Life Cycle of a 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, until the study is closed and all publications completed. The sub-group will provide ongoing review and community control 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 Managers will endeavour to invite additional community members to participate.

Aboriginal Community Control of Research

A key role of the Panel will be 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 will 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.
  • 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 Indiggenous people is expected, at least half of those selected for consultation will include Indigenous people.

Consultation Process

Following initial approach and scoping involving the researchers and Panel Managers, an agreement is signed by the Panel Managers or the Director of the CSRH, documenting the involvement of the Panel in providing community input and control for each specific study. The Panel Managers 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 typically is 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.

Contact Us

Professor Carla Treloar, Director, Centre for Social Research in Health
Phone: +61 2 9385 6959
Email: c.treloar@unsw.edu.au

Community Reference Panel
Email: crp@unsw.edu.au