The National Health and Medical Research Council (NHMRC) engages with health consumer and community groups to identify community representatives, consumers and/or carers to participate in our committees, peer review processes, guideline development and public consultation.
The NHMRC engages with health consumer and community groups to identify community representatives, consumers and/or carers to participate in our committees, peer review processes, guideline development and public consultation. Consumer and community involvement underpins NHMRC's strategy for health and medical research and is a strategic priority area for the 2021–2024 triennium.1 Drawing on the lived experiences of consumers and the community is essential to delivering on NHMRC's purpose through the 3 strategic themes of investment, integrity and translation.
Since 2017, NHMRC has included consumer and community representatives (CCRs) in the membership of peer review panels (PRPs) for the Targeted Calls for Research (TCR) scheme and some priority-driven research grant opportunities. The specific focus of TCRs provides the opportunity for consumer and community members, researchers and NHMRC to work together to identify the best and most relevant research to improve the health of Australians. Historically, CCRs involved in PRPs for the TCR scheme were asked to comment on how well consumers or the community were engaged in the design, conduct and dissemination of outcomes of a research proposal. They also commented on whether the proposed research addressed the concerns and needs of the consumer/ community and whether it would be performed in a culturally appropriate manner. The CCR comments were considered by the scientific or technical members of the panel when formulating their final scores against the assessment criteria and category descriptors.
CCRs are considered to include those who have a condition or state of health, or who use or receive health care services, or their family members and/or carers. Those who represent the views and interests of consumer organisation or community or patient advocacy groups may also be involved as CCRs in the peer review process as they can contribute valuable knowledge and perspectives about the lived experience (more information provided in Part 5. Definitions of CCRs).
NHMRC provides leadership and guidance to the health and medical research sector on how to engage meaningfully with consumers throughout all stages of research and health care. In 2016, NHMRC and The Consumers Health Forum of Australia Ltd (CHF) released the Statement on Consumer and Community Involvement in Health and Medical Research (the Statement). The Statement's purpose is to guide research institutions, researchers, consumers and community members in the active involvement of consumers and community members in all aspects of health and medical research. The Statement was developed in recognition of the contribution that consumers can make to research, as well as their right to participate in research. The Statement replaced the joint NHMRC/CHF Statement on Consumer and Community Participation in Health and Medical Research (2002).
In 2020, NHMRC released a suite of resources on consumer and community involvement in, and expectations of, health and medical research. The Toolkit for Consumer and Community Involvement in Health and Medical Research was developed in consultation with members of the Community and Consumer Advisory Group (CCAG) from the 2015–2018 and 2018–2021 triennia. The Toolkit complements the Statement by providing further detailed information and tools for all stages of research, including the planning and preparation of grant applications, conduct of research and the evaluation of outcomes.2
This Policy on Consumer and Community Participation in Peer Review (this Policy) aims to provide a consistent approach to consumer and community involvement in peer review for TCRs and some priority-driven research schemes. It provides structure to elevate the role of CCRs from being advisory to being full scoring members of a peer review panel. CCRs will be required to provide a score for each application based on specific assessment criteria and category descriptors in the grant opportunity and peer review guidelines.
The CCR score will be combined with the scores provided by the scientific/ technical members of the peer review panel to determine an overall score and ranking for funding recommendation purposes.
3. Principles for CCR involvement in peer review
The implementation of scoring by CCRs on PRPs will harmonise with NHMRC's Principles of Peer Review and is based on the following values:
- Consumers and the community are acknowledged as key stakeholders in research
- Consumers, the community and researchers involved in peer review work together to ensure that research is inclusive and meets the needs of the Australian community
- Consumers and community representatives in NHMRC peer review processes are provided with the information and training required to fulfil their roles.
4. Legislative and policy context
A CCR is appointed to a PRP under section 39 of the National Health and Medical Research Council Act 1992 (NHMRC Act). As this appointment process results in the individual being a representative of NHMRC, there are a number of requirements and responsibilities members must fulfil and abide by, which include:
- Maintaining lifelong confidentiality and not disclosing any information or documents regarding applications under review to people who are not part of the process
- Advising NHMRC of all real or potential conflicts of interest with applicants listed
- Conducting themselves in a manner consistent with the APS Code of Conduct.
There are a number of policy documents that need to be considered by CCRs when discharging their duties on a PRP:
- Policy on the Disclosure of Interests requirements for prospective and appointed NHMRC committee members
- The Grant Opportunity Guidelines and Peer Review Guidelines relevant to the PRP to which they are appointed.
5. Definitions of Consumer and Community Representatives
Individuals identified to act as a CCR on NHMRC peer review panels have direct or indirect knowledge or lived experience of a certain health condition or state of health. The table below provides an overview of the types of individuals or entities who are likely to act as a CCR or nominate an individual to undertake the role on their behalf.
|Patient||A person who is receiving treatment for or living with, or has recovered from, a condition or state of health.|
|Carers||Individuals who provide patients with supportive care, assistance and access to services. They can offer important perspectives on what it means to care for someone, on health services, and on the wider impacts of illness on a patient and their family. They might also be able to articulate the values and preference of patients who are unable to speak for themselves (such as infants) and may have values that differ from those of patients (for example, on end of life care). Family members and friends may provide related experiences.|
|Consumer representatives||People nominated by a consumer organisation who bring a consumer perspective of their own or that of others. Although they may have been nominated by a consumer organisation, participation on a PRP is as an individual. The term 'consumer advocate' is sometimes used to describe a similar role, including for those representing a particularly vulnerable person or group.|
|Consumer organisations||Organisations that research and advocate on behalf of consumers on a range of issues, including consumer rights. They may also be familiar with health and related social service delivery issues.|
|Community members||People who share a common interest or background (for example, cultural, social, political, health, economic), or have experience with a particular public health matter or environmental exposure (for example, an area of water contamination).|
6.1 Selection and recognition of CCRs
Peak bodies are an obvious source for finding CCRs. However, CCRs may be identified through other means, such as recommendations from other government departments, research organisations or social media. The expertise of CCRs approached to participate in a PRP should be relevant to the scope and objectives of the grant opportunity. For TCRs and strategic calls with a focus on Aboriginal and Torres Strait Islander health, CCRs will be selected from the NHMRC Aboriginal and Torres Strait Islander Consumer and Community Representative Panel.
As a CCR is appointed to a PRP as an individual, peak bodies and representative organisations will need to acknowledge that a CCR from their organisation will not be permitted to share or discuss any details of the applications they are assessing. General discussion with stakeholders, based on the scope of the research outlined in the relevant grant opportunity guidelines, can occur before the PRP meeting. CCRs may also provide feedback, in general terms, on their experience of participating in a panel but must not discuss panel membership or specific details of applications, applicant teams or assessment outcomes.
CCR members will be identified and selected based on their relevant experience and ability to fulfil the role duties and selection criteria at Attachment 1.
The membership of a PRP is confidential so that frank and honest discussion can occur on the strengths and weaknesses of each application. Recognition of the contribution CCRs make to NHMRC’s peer reviewer process will be through the annual honour roll published on the NHMRC website.
6.2 Training and support for CCRs
Orientation and training materials have been developed to support CCRs to participate in the TCR PRPs. These have been influenced by the guidance used by Cancer Australia, Cancer Council, Telethon Kids Institute and the National Breast Cancer Foundation as well as feedback received from past CCRs. The TCR team also provides one-on-one support to CCRs as needed by videoconference, email or phone.
Additional training resources will need to be developed to help CCRs navigate the grants management system Sapphire. CCRs may also require a support person to enable them to access, assess and participate in the PRP.
Any digital material developed will need to account for the diverse range of needs or abilities of the CCR on the panel to ensure the same access to content.
6.3 Scoring by CCRs
CCRs will be required to provide comments and score research applications that progress to a PRP meeting. CCRs will have access to the whole research application in Sapphire but their primary focus should be on the 2-page CCR Summary in the grant proposal detailing consumer involvement.
Each CCR will be assigned 3 to 4 applications for which they will be required to submit an initial score against the assessment criteria and to act as the 'spokesperson' at the PRP meeting. Scoring must be done in accordance with the 3 CCR assessment criteria and category descriptors outlined in the grant opportunity and peer review guidelines.
At the panel meeting, CCR spokespersons will lead a discussion on whether consumer and community perspectives have been taken into account in the planning and design of the proposed research, the strengths and weaknesses of the current and proposed involvement strategy and whether the application addresses the objectives of the TCR and would be of value to the target population.
Following the panel discussion, each CCR will then score every application considered at the panel meeting. CCR spokespersons will have the opportunity to revise their initial score as a result of the discussion.
The combined CCR score will contribute 20% of the overall score for each application received through the TCR scheme. Other NHMRC priority-driven schemes may adopt this approach but may amend this weighting depending on the type of research being funded and overall objectives of the funding call.
6.4 Evaluation and feedback
At the completion of each TCR scheme PRP, feedback is sought from all members on their experience via an online survey. Parameters include:
- communication and support from ONHMRC
- clarity of what is required of the member
- the member's capacity to perform the tasks required of them
- logistical issues with managing information
- navigation of the grants management system.
The feedback received assists ONHMRC to identify areas where improvements can be made.
With the implementation of scoring by the CCRs, a specific evaluation framework will be developed in consultation with CCAG. Feedback from the CCRs will be important to assess whether the PRP process is inclusive of all consumers/ community members, the assessment criteria category descriptors are appropriate and the format and structure of the information provided in the grant proposal are sufficient.
7. Approving authorities
The Chief Executive Officer of NHMRC is the approving authority for this Policy. NHMRC Executive Directors have the delegation under section 39 of the NHMRC Act to establish and appoint members to a Peer Review Panel.3
The Targeted Research Program Section is responsible for updating, implementing and reviewing this Policy and the supporting resources. This Policy has been formulated based on the analysis of a number of national and NHMRC schemes that use CCRs in their peer review process. In finalising this Policy, feedback has been provided by CCAG, Research Committee and NHMRC scheme directors.
Attachment 1: Consumer and Community Representative (CCR) duties
Toolkit for Consumer and Community Involvement in Health and Medical Research (2020) Consumer and community engagement
 Subsection 41(2) of the NHMRC Act
Consumer and Community Representative (CCR) duties
In order to adhere to NHMRCs well-established Peer Review Processes and Policies, CCRs are required to:
- Agree to, and abide by the strict lifetime confidentiality agreement regarding applicant teams and applications submitted to grant opportunities
- Read the relevant Grant Opportunity and Peer Review Guidelines for the Targeted Call for Research (TCR)
- Inform NHMRC of any conflicts of interest and indicate suitability against all applications submitted to the grant opportunity
- Submit (qualitative and quantitative) initial assessments in Sapphire for applications to which they are assigned as a spokesperson, within the timeframe prescribed by NHMRC, in line with the specific Consumer and Community assessment criteria outlined in the Grant Opportunity Guidelines
- Before the Peer Review Panel (PRP) meeting, familiarise themselves with all non-spokesperson applications that will be considered at the meeting
- Attend the PRP meeting (either via videoconference or face to face) and provide a verbal report highlighting the strengths and weaknesses of the application identified in their initial spokesperson assessment
- Answer any questions posed by other panel members from a consumer/ community perspective and based on their knowledge and experiences
- Participate in panel discussion and provide a final score for each (non-conflicted) application considered at the PRP meeting (note that CCRs can revise their initial quantitative scores following full panel discussion).
Guiding principles for identifying and appointing Consumer and Community Representatives
To ensure that CCRs engaged for TCR grant opportunities are suitably experienced and can make a meaningful contribution to the assessment process, prospective representatives ideally will possess:
- Direct or indirect knowledge or lived experience of a certain health condition or state of health relevant to the scope, intended objectives and outcomes of the TCR grant opportunity
- Personal or professional experience with healthcare, health services, health research or other health-related fields, either as a consumer or a provider
- Previous experience with the peer review of grant applications with NHMRC or other funding bodies (Australian Research Council, Department of Social Services, Cancer Australia, state/territory governments, etc).