Review of the 2016 Statement on Consumer and Community Involvement in Health and Medical Research

What has worked well? The existing statement is a good overarching statement, short and succinct, however, there's a need for more "how to" guides for consumers and researchers.

What has not worked well?
The current statement has been written for a research audience, it needs to be co-written with consumers to ensure that it is relevant for consumers and researchers. There needs to be clear definitions of key terms in the statement, especially the difference between participation, involvement and engagement. An example of this is found in the Health Consumers NSW and Sydney Health Partners developed a Consumer and Community Involvement language guide, available online at
https://cdn.sydneyhealthpartners.org.au/wp-content/uploads/2023/03/CCI-Language-Guide.pdf.

Additionally, the term ‘consumer’ currently refers to people with distinct perspectives and lived & living experiences such as carers and community members. It is essential that the expertise of consumers, carers and community members are separately recognised & acknowledged in the Statement.

The CCI Statement needs more practical examples of different types of involvement of consumers and the community in research including examples of involving consumers from diverse backgrounds (for example, people from culturally and linguistically diverse backgrounds, people living in rural and remote areas).

The statement should also be written in an Easy Read version to make it accessible to all consumers and the broader community.

Without consumers involved in research, research is undertaken that is not meaningful for consumers, carers and the community. Consumers, carers and the community have a fundamental right to be actively involved in all health research and throughout the research process. Involving consumers improves the engagement and participation of consumers and the community in health and medical research.

I have a lived & living experience of mental distress and complex trauma. I have worked in the mental health sector as a peer worker since 2013 in policy, education, research, facilitation and project management roles.

I provide a consumer perspective on two MRFF-funded studies (ALIGNED at The George Institute - steering committee) and EMPACT (at ANU - Associate Investigator), am the Deputy Chair of the Consumer & Community Advisory Committee at the George Institute and am on the Independent Advisory Board of the ALIVE National Centre for Mental Health Research Translation.

Too often, people with lived experience are denied the opportunity to contribute to health & medical research in meaningful ways. It is imperative that researchers move from tokenistic involvement such as informing or consulting with consumers, carers & community members to enabling us to advise, partner with and lead research.

The overarching values of respect, equity, collaboration, inclusion, diversity, transparency, trust are essential to include in the Consumer Statement. They should be defined to promote equal partnerships between consumers and researchers.

The overarching values of respect, equity, collaboration, inclusion, diversity, transparency, trust are essential to include in the Consumer Statement. They should be defined to promote equal partnerships between consumers and researchers.

The overarching values of respect, equity, collaboration, inclusion, diversity, transparency, trust are essential to include in the Consumer Statement. They should be defined to promote equal partnerships between consumers and researchers.

Consumers, carers and community members should be involved at all stages of research, from initial project conception through to dissemination.

Consumers, carers and community members should be in equitable, mutual & reciprocal partnership with researchers.

Consumers, carers and community members with intersectional perspectives should be involved in research.

Mutually respectful partnerships are enabled by clearly articulated & agreed upon roles and responsibilities of consumers, carers & community members and researchers.

Respect for the lived experience of consumers, carers and community expertise, to be defined in the Statement.

Honesty in the development, undertaking and reporting of research, including presenting information truthfully and accurately in proposing, conducting and reporting research. Consumers, carers & community members should be active partners and have access to information in a transparent and accessible form.

Respect for research participants.

Research institutions, researchers, consumers, carers and community members all have a responsibility to consider the best person(s) for a particular role or task, taking an intersectional approach to age, gender, disability, cultural background and experience, health system experience and availability.

Consumers can play a variety of roles depending on their skills, knowledge and lived and living experience.
Consumers, carers and community members can be involved at various levels of research activity and the institutions in which research is conducted. This includes planning and co-deciding, governance, developing research design and questions, recruitment, seeking funding, conducting the research, communicating the outcomes and evaluation.

Research organisations may need to support consumers, carers and community members to acquire skills, information and support in order to add value to the development, conduct and communication of research. The skill development for consumers is critical, they need training and support to be actively involved in research. This needs to be funded by the NHMRC.

It is imperative that research organisations take a trauma informed approach to working with consumers. Consumers can be retraumatised by researchers, particularly if consumers are not actively involved in the early stages of the research process. Involving consumers throughout the research process should reflect trauma informed approaches.

Consumer-led organisations have not been recognised in the statement. Consumer-led organisations that work with consumers and represent the interests of consumers in the research process are critical partners and should be recognised in the Statement. Consumer-led organisations should also be funded to be active partners in the research process.

Research institutions, researchers, consumers, carers and community members all have a responsibility to consider the best person(s) for a particular role or task, taking an intersectional approach to age, gender, disability, cultural background and experience, health system experience and availability.

Researchers should involve consumers, carers and community members at various levels of research activity and the institutions in which research is conducted. This includes planning and co-deciding, governance, developing research design and questions, recruitment, seeking funding, conducting the research, communicating the outcomes and evaluation.

Yes, consumers, carers and the community have a right to be active partners in all health and medical research. The involvement and engagement of consumers, carers and the community in research improves the health research that is undertaken and health outcomes across communities. It also supports the participation of people with lived experience in all health research which improves health outcomes.

Yes, consumers, carers and the community have a right to be involved in research, it improves the kind of health research undertaken which supports the recruitment of people with lived and living experience and their loved ones to be participants in health research. Nothing about us with us!

Research organisations may need to support researchers to acquire the skills & knowledge to respectfully & appropriately involve consumers, carers and community members as partners in research. This should be followed up by combined capacity building in which consumers, carers, community members and researchers are able to share their lived & learned expertise.

It is imperative that research organisations take a trauma informed approach to working with consumers. Consumers can be retraumatised by researchers, particularly if consumers are not actively involved in the early stages of the research process. Involving consumers throughout the research process should reflect trauma informed approaches.

Each research organisation should appoint CCI champions to highlight the benefits of consumer engagement. Key research leaders with experience in consumer involvement advocate to improve the level of understanding & commitment to CCI among their peers.

Research funders should ensure that research grant applications are assessed with reference to how they meaningfully involve consumers, carers and community members. A minimum of two paid & experienced consumers should be on every panel assessing research grant applications.

Yes, mandating the involvement of consumers, carers and community members in research funding will ensure that CCI is viewed as essential to research, rather than an optional 'add on'. Research into which consumers, carers and community members have meaningful input - as partners with researchers - will be more relevant and appropriate, leading to more effective translation into practice and better health outcomes for the most affected population.

Researchers should work in partnership with funded consumer-led organisations to support the involvement of consumers at all stages of health research. Researchers may over-estimate the level of involvement that consumers, carers and community members have in their research, so it is important that the Statement provide clear definitions of each level and that this is supported by follow-up webinars or workshops. Researchers should aim for the highest level of involvement that they can authentically offer - honesty is important here so as to build trust and avoid tokenism e.g. don't call it co-design if it is consulting and don't call it partnership if it is engagement.

The involvement of consumers, carers and the community in health and medical research requires the funding of infrastructure to support their capability and capacity. Consumer-led organisations approached to be research partners for NHMRC grants are often asked to provide in-kind support for research grants which is not financially sustainable. Consumer-led organisations should be funded to be research partners in NHMRC grant applications.

The implementation guide for the CCI Statement could be improved and there needs to be a central repository where resources, tools and templates are shared. This includes tools and templates for researchers and for consumers, carers and community members. It could also include an accreditation process for researchers, consumers, carers & community members in CCI in research. Following this there could be an app or website developed with consumers, carers & community members where they can register their interest for being involved in research which is actively managed by a consumer-led organisation (this would be different from existing registers, such as Join Us, for consumers or carers who are interested in becoming research participants).

The current NHMRC Sapphire system is designed for researchers. The NHMRC requires consumers, carers, community members or consumer-led organisations who are research partners e.g. Associate Investigators to register their details on the NHRMC Sapphire system. This system is not appropriate for consumers, carers, community members or consumer-led organisations friendly and is purely designed for researchers. This system needs to be reviewed in partnership with consumers and consumer-led organisations to ensure that it is accessible for consumers and consumer researchers.

There needs to be consideration for how the NHMRC review the track record of consumers in research which should be a separate process from researchers. Many consumers or carers become involved in research through their lived experience and may have many years of experience as a consumer or carer representative but have had limited opportunities to co-write publications. The current NHMRC system disadvantages consumers.

Consumer-led organisations need additional funding to build a pool of consumers trained in understanding health research. NHRMC should fund consumer-led organisations to build and develop infrastructure to support the capacity of consumers to be involved in research.