Community participation in the research process helps to make research relevant and useful for the community. This involves seeking community input into research objectives and design, measures used to collect data, and issues of consent and confidentiality.
To support access to appropriate community expertise throughout the research process, the Centre for Social Research in Health established a Community Reference Panel (the ‘Panel’), with a particular focus on communities which are of most relevance to CSRH research.
The purpose of this Panel is to provide researchers with a mechanism to access the insights of people with relevant lived experience, and to compensate community members for their time and expertise. This model does not replace the need for formalised research advisory committees and governance processes.
The Community Reference Panel is supported by a grant from UNSW Research Infrastructure.
About the panel
The Panel consists of community members willing to provide considered comment and feedback on research plans and materials, drawing on their personal experiences in a range of areas.
Two sub-panels were originally developed, but only panel 1 is currently in operation, due to the impacts of COVID-19
- People with lived experience of incarceration, drug use, drug treatment, sex work or diagnosis with hepatitis C
- People with lived experience of disability [currently in hiatus]
A key aim of the Panel is to provide a mechanism through which to elicit meaningful input from Indigenous Australians on the design and conduct of research. We therefore aim to maintain at least a quarter of Panel members who identify as Aboriginal or Torres Strait Islander.
Panel members provide advice and feedback as community members with perspectives similar to those that researchers hope will take part in their project.
Panel members can be consulted about various aspects of a research project, including study benefits, research questions, recruitment materials, data collection instruments, information statements, and interpretation of findings. Indigenous members of the Panel can also be consulted about specific issues related to the appropriate design and conduct of research with and for Indigenous people (see section on Aboriginal community control of research below)
Researchers can make best use of the Panel consultation process by developing questions and materials which are easily understandable to those who are not trained in research. Panel members should not be expected to contribute feedback of the kind provided by formal community representation roles within organisations, as our Panel members represent everyday, non-expert, perspectives, rather than professional perspectives.
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We are always recruiting new members to the Panel, to ensure a broad range of perspectives can be accessed for each new project. A sub-group of Panel members is invited to take part in a consultation, ensuring that there is a good fit between the research aims and panel perspectives Panel members are provided with $40 compensation for their time and expertise for each consultation.
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The Panel Coordinators are:
- Melinda Walkeris a Gumbaynggirr women and a social work student at UNSW
- Kim Beadman, an Aboriginal woman from La Perouse and a recent graduate of UNSW
- Mitchell Beadman, an Aboriginal man from La Perouse and a student at UNSW
The Panel operates entirely independently from the researchers who are seeking community input. The Panel Coordinators are responsible for all aspects of the facilitating the Panel including:
- Making initial contact with and extending an invite to Panel members to participate for a specific project
- Providing study information to Panel members for their review
- Arranging and conducting consultations with Panel members, typically by phone, depending on availability, location and preference of the members
- Reporting feedback provided by the Panel Members to researchers
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Following an initial approach and scoping process involving the researchers and Panel Coordinators, an agreement is reached between the researcher and the Panel Coordinators or the Academic Lead from 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 these members to invite them to be involved in that consultation.
Depending on the study duration, the involvement of the members may be limited to one consultation, or could involve a series of consultations throughout the project. The consultations are semi-structured, with topics customised to each study according to the research objectives, procedures and target population.
Feedback is provided in the form of feedback reports, with brief summaries of the process and participants.
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.
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A key role of the Panel is to support Aboriginal community control for projects impacting Indigenous people by providing a mechanism for seeking community input, with appropriate compensation. 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
- Potential issues with achieving appropriate community control over the research
- Review of research findings, and advice on publication and dissemination of findings.
For projects in which an over-representation of Indigenous people is expected, at least half of those Panel members selected for consultation will be Indigenous.
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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 require additional or different commitments from researchers, well beyond the scope of the Community Reference Panel.
Typically, projects will benefit from establishing a formal advisory group that can provide expert advice and support the governance processes throughout the life of the project. This group might include both professional representatives of stakeholder organisations and community advocates.
Some key organisations that can provide expertise in areas of research related to this panel include:
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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 .Ìý
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If you are interested in finding out how the Panel can assist your research project, email our Panel Coordinators or contact our CRP Academic Lead, Associate Professor Christy Newman:Â c.newman@unsw.edu.au
Contact us
If you are interested in finding out how the Panel can assist your research project, email our Panel Coordinators or contact our Director, .