What was the review?
The National Health and Medical Research Council (NHMRC) and the Consumers Health Forum of Australia Ltd (CHF) conducted a review of the Statement on Consumer and Community Involvement in Health and Medical Research (the Statement) and invited Deakin University to participate as part of the consultation process.
The Statement on Consumer and Community Involvement in Health and Medical Research (the Statement)1 was developed by the National Health and Medical Research Council (NHMRC) and the Consumers Health Forum of Australia (CHF). The Statement was originally developed in 2006 and last updated in 2016. Its aim is to support consumer and community involvement across all types and levels of health and medical research.
The review will ensure the Statement remains a trusted resource providing national leadership and overarching guidance to support consumer and community involvement in health and medical research. The Statement will be reframed to focus on the principles and values of consumer and community involvement, and the roles and responsibilities of all involved. Implementation matters, or ‘best practice’ consumer and community involvement is out of scope for the review.
The following paragraphs are excerpts from the full submission. To read our complete recommendation, please download the full submission.
Why is consumer and community involvement in research valuable?
There are so many complex, wicked problems to be solved to achieve equity in health and wellbeing in our diverse communities. We have rising expenditure in health, a system and workforce in crisis and some of the gaps in experiences and outcomes across different parts of the community are widening. We need to be developing and testing solutions that are innovative and transformative and bring new ways of thinking and problem solving to bear. So often our work in health research is done with the best of intentions but without truly understanding or engaging with people who can bring insights from their lived experience as representative of the intended beneficiaries of the potential intervention that is being explored or tested. Without that grounding through every step in the research cycle, unconscious biases are not uncovered, assumptions remain untested and potential solutions may be missed. Essentially, we risk wasting efforts and resources or at the very least those resources not being optimised.
Genuine CCI offers multiple benefits for research conduct, outcomes and communities, helping to increase the relevance and quality of our research, and ensure it has maximum benefits to those who need it the most. Through safe and effective CCI, our research efforts are grounded in what matters most to those most affected. The unique perspectives and expertise of community or of people with specific lived and/or living experiences of ill health, harm or recovery including as a carer, family member or supporter can help to shape research and improve its applicability, acceptability, accessibility, appropriateness and effectiveness. CCI helps to identify potential barriers to access and participation in research and allows us to design research that is more inclusive and equitable, and more likely to have real impact. It can also support increased credibility and community ownership and uptake of research, enabling community-led support and advocacy for research funding and project implementation. Ultimately, this will result in better outcomes that are more likely to be translated into meaningful changes in systems, processes and practice.
As ethical research practitioners, the mantra in many disciplines is “Nothing about me, without me” or “Nothing about us, without us”. This mantra reflects a commitment to the rights and expertise of the beneficiaries of our research and their involvement in decision-making, and an awareness that they are often in the best place to understand and know about their needs and priorities and that their involvement is fundamental to improving health outcomes.
Why does consumer and community involvement in research matter to you?
Because it is a fundamental right and responsibility for us all and because it works. Because unmet health needs are so great and community members have the most at stake. Because we see the value and impacts of community-supported and community-led research. Because, as researchers, we have a responsibility to listen to and amplify the voices of the community we serve; be responsive to community needs and interests; and recognise the value of lived experience contributions.
CCI from all parts of the population helps our researchers to better understand the needs of consumers and communities. With a better understanding, researchers conduct research that has more meaningful impact and positive outcomes. Without lived experience of an issue/disease/condition, researchers cannot fully comprehend how appropriate and useful research design, methodologies and dissemination strategies will be. When done well and safely, the insights that are generated are fundamental to our success as researchers and lead to more meaningful, translatable outcomes.
What overarching values are essential to include in the value statement of the revised Consumer Statement, and why?
Authenticity, partnership, equity and accountability – these are fundamental to effective CCI practice and building skills and practice that truly bringing these values into action will lead to better, safer, more meaningful and effective CCI. At their heart these are core to building trust, safety and enabling people to find their voice and agency and to ensuring that our practice is not guided by those who are easiest to engage but that we strive to be inclusive and to work with people whose voices are unheard or hardly heard (with the supports that are required for that to be effective).
We also advocate for the inclusion of respect. Respect acknowledges: community members autonomy in their own health decisions; lived experience as a form of expertise; community involvement in research as a choice and not a responsibility of people with lived experience. Respect is an essential component of effective partnerships and can assist in minimising stigma and discrimination.
The current values might be better framed within the purpose statement as they reflect the vehicles through which effective practice occurs and the vision is ultimately enabled.
Should involvement of consumers and community members be an expectation of research?
Yes. To improve applicability, acceptability, accessibility, appropriateness and effectiveness of research and its dissemination and translation into meaningful impact in the community leading to a greater positive impact for those who need it the most. As discussed above, the nature of this participation or partnership may vary based on the type of research, and this should be clearly articulated through the Statement to ensure awareness of how to involve consumers in all types of research in an appropriate way.
What did the Review find?
Stakeholders acknowledged a need for supplementary guidance and resources to support the implementation of the revised Statement. This could include creating accessible versions of the Statement, providing training for researchers and consumers, and establishing mechanisms for monitoring and evaluating the impact of consumer and community involvement. However, due to the variance of consumer and community involvement in different types of research, specific implementation guidance will not be included. NHMRC is committed to meaningful involvement of consumer and community representatives in health and medical research, however developing contextual implementation and training resources is outside the scope of this work. This will instead be considered once the revised Statement is published.
Feedback gathered through the national stakeholder engagement process will inform the revision to the Statement, ensuring it reflects contemporary practices and meets the evolving needs of the health and medical research community. The revised Statement will promote meaningful consumer and community involvement, ultimately enhancing the impact and quality of research.
Review of the Statement on Consumer and Community Involvement in Health and Medical Research | NHMRC
