Consumer and community involvement in research—The disconnect between policy and practice

Abstract

As a profession, we partner with and privilege the voices of individuals, groups, and communities to address identified occupational issues. This form of partnering ensures a client-centred focus and the achievement of optimal participation in the occupations that the individual, group, or community need, want, and have to do. Equally important for the profession is that we partner with consumers and community at the service level to co-develop our practices and improve the quality and appropriateness of our services. Participatory research approaches that include co-design principles provide occupational therapists, and other disciplines, with methodologies to involve consumers and community members in the development of our services.

The involvement of consumers and community 1 members in all aspects of health and medical research is promoted globally. The statement on consumer and community involvement in health and medical research (National Health and Medical Research Council and Consumers Health Forum of Australia, 2016) sets out practical ways that research institutions, researchers, consumers, and communities can facilitate and ensure authentic involvement in all research. The National Health and Medical Research Council (NHMRC) Toolkit for Consumer and Community involvement (NHMRC, 2020) further supports researchers to understand how and when to involve consumer and communities within research. The eight key points outlined in a self-assessment tool are: building relationships; developing the research idea; developing the project and seeking agreement; collecting data, analysing data, and making sense of the findings; reporting, sharing and translating the results into action; learning for the experience. The steps resemble those followed in the occupational therapy practice process and it is therefore not surprising that the profession has been a leader in adopting consumer and community involvement in research. Indeed, in Australia, we have many researchers who have led the way in consumer-partnered research with people living with mental health conditions (Ennals et al., 2022), dementia (Liddle et al., 2022), and acquired brain injury (Bould & Callaway, 2021), to name a few.

Consumer and community involvement within research must be authentic and should commence from the point of idea conceptualisation. Effective and authentic engagement requires commitment from the organisation, grant funding bodies, researchers, consumers, and communities. However, there is a current disconnect between the statement on consumer and community involvement, the required participatory approaches, and the review processes of grant applications. A recent rapid review of participatory research recommended that there must be a change in values and attitudes of academic institutions and ethical reviews bodies towards participatory approaches and an increased willingness to accept the ambiguity and flexibility required by these approaches (Scher et al., 2023). In this editorial, I propose that change is also required in the knowledge, values and attitudes of the people who review and appraise grant applications towards the participatory approaches required to conduct research with consumers and community involvement.

Change has already occurred at many levels within the Australian research ecosystem, with organisational policies recognising consumers in research, providing access to research support networks for consumers, and building capacity of consumers and researchers. However, discussions amongst colleagues and feedback received from unsuccessful grant applications raise questions about how effectively the statement has been operationalised within grant review and funding allocation policies and procedures. The bias in grant review towards traditional research methods persists, with greater confidence demonstrated in the ranking of these proposals due to the clarity for the reviewer and funding body about potential return on investment. This contrasts with participatory approaches that are by their very nature ambiguous, working together with consumers to clarify and define the need or problem, generate the solutions, and then co-design the approaches to evaluate the solution. Although this approach is consistent with the research required to ensure authentic consumer and community involvement it is often at best, considered novel and high risk, or at worst appears poorly understood and valued.

Three recommendations are proposed to improve support for research that involves consumers and community as partners and co-researchers. As a first step, there should be better matching of knowledge and expertise on grant review panels to prevent researchers who do not have experience in, or are not supportive of participatory approaches, from reviewing applications with consumer and community involvement. This will reduce the commonly experienced negative outcome and feedback that clearly indicates the reviewer does not understand or value participatory approaches. A second recommendation is that the marking criteria used by grant reviewers should better represent the appraisal of participatory approaches and the extent of authentic consumer and community involvement. This addition would redress some of the bias towards traditional methodologies and assign weighting towards the projects that include the steps for consumer and community involvement as outlined by the NHMRC. Finally, granting bodies should consider the addition of an application category specifically for participatory approaches with consumer and community involvement, thereby reducing the impact of scoring bias towards traditional methodologies when included within the same grant category.

Consumer and community involvement in research requires investment and resources from the point of project conceptualisation. Despite changes in organisational policies and investment in capacity and capability building, grant review processes continue to have a bias away from participatory approaches. It is critical that the importance of consumer and community involvement in research is better represented in the research grant policies and procedures of the organisations that manage funding. Until then the NHMRC vision regarding consumer and community involvement in research will remain unrealised.