Principles for consumer involvement in health and medical research.

Abstract

The global landscape for health and medical research has undergone significant changes since research funders and governments first encouraged or required researchers to include the consumer ‘voice’ in research. This is well illustrated by current events in Australia. Various principles, statements, guidelines, frameworks, and toolkits have been developed over the past two decades. These resources' collectively aim to support effective consumer involvement. Having worked as a consumer advocate and involvement program manager since 2004, I have contributed to many of these resources. I have used them to increase awareness and knowledge about the value consumers bring to research when involved in respectful partnerships. How the consumer ‘voice’ is implemented depends on various circumstances, including organisational culture, funding, experience and confidence of researchers, and access to consumer networks. The results are varied and provide examples where there is little or no evidence of involvement of consumers, through to good practice in areas such as HIV, cancer, and Aboriginal and Torres Strait Islander research. The lack of a single set of agreed national principles wastes precious research funding and resources. Many senior consumer advocates have expressed similar concerns and how variation in expectations creates an inequitable environment for everyone. During the past 20 years, consumers, consumer organizations, research funders and government agencies have attempted to increase the consumer voice in research. In 2002, the National Health and Medical Research Council (NHMRC) and Consumers Health Forum (CHF) published a joint Statement on Consumer and Community Participation in Health and Medical Research (the Statement). The Statement was revised in 2016 and reflected changes to NHMRC's funding processes. Applicants applying for funding from schemes such as Centres of Research Excellence and Partnerships for Better Health were required to demonstrate how consumers were involved from developing through to disseminating research results. Applicants seeking funding for Aboriginal and Torres Strait Islander research must address the Indigenous Research Excellence Criteria which includes community engagement. There needs to be more information available about the implementation of the Statement and how organisational barriers and research culture are addressed. The real value of having this important commitment from the many consumers and researchers who contributed to the development of the Statements still needs to be fully realised. Cancer Australia and Cancer Voices Australia collaborated in 2011 to develop a National Framework for Consumer Involvement in Cancer Control (the Framework). The Framework's principles were intended for cancer research but are broadly applicable to all health and medical research areas. Significant resources were made available to ensure the Framework was implemented into all aspects of cancer research. The introduction of scoring and criteria to assess consumer involvement in grant applications was introduced to the Grant Review processes. This had a positive impact on ensuring the consumer's voice is integral to cancer research. The Framework for cancer research and the NHMRC processes demonstrates good practice principles for involvement activities. Unfortunately, there is limited transferability to all health and medical research areas. This has led to researchers and research organisations implementing their interpretation of consumer involvement. These variable practices may be due to a lack of understanding of the benefits of consumer involvement, training, or supportive national coordination and resourcing. The establishment of the NHMRC accredited Research Translation Centres in 2017 and the Australian Health Research Alliance has seen a strong commitment to strengthening consumer involvement. In 2022, the Health and Medical Research Office at the Department of Health and Aged Care established a Consumer Reference Panel to advise on strategies for strengthening consumer involvement in the Medical Research Futures Fund (MRFF). A key task has been to commence developing consumer involvement principles as part of various activities planned to enhance consumer involvement across the MRFF. The NHMRC and CHF will undertake a review of the Statement in 2023. Developing national principles inclusive of these elements would provide guidance and enable a national collaborative approach to implementing effective consumer involvement. The initiatives undertaken so far are laudable and underpinned by a will to make changes to large and complex systems. Continuing to develop resources for effective consumer involvement without consistent principles or coordinated implementation will compound issues consumers and researchers face. Consumer involvement is not standard practice in health and medical research in Australia and for some it remains an ‘optional extra’. We will see the continuation of ad hoc consumer involvement that is ineffective for consumers or researchers. Effective involvement will only be fully realized when partnerships between consumers and researchers are supported with policy, resources, and funding by governments, funders, research organizations, researchers, and consumers. The UK's National Institute of Health Research developed and implemented Standards for Public Involvement (2019) provides Australia with an exemplar of good practice. Increasing awareness of the value of including the consumer voice in research reinforces the need for a single set of national principles. Without a national approach, consumer involvement will continue to be implemented inconsistently and reflective of individual interpretations. We cannot be confident the rights of all Australians to be involved in research are respected, valued, and people's lived experiences truly inform health and medical research. None declared. Open access publishing facilitated by The University of Western Australia, as part of the Wiley - The University of Western Australia agreement via the Council of Australian University Librarians.