How should Australia make the most of consumer participation in health services research?

Health services researchers support the identification, implementation and uptake of the most appropriate health care that is acceptable, accessible, safe, effective and value for money. To identify appropriate health care, health services researchers gather evidence to inform questions of who should deliver what health care in what settings to which patients. Such evidence includes data from clinical trials to determine what health care delivers the best patient outcomes, but also qualitative research to better understand why different ways of delivering health care produce different outcomes. As an example, Jodi Gray and colleagues interviewed consumers to assess the acceptability of a nurse-led obesity management program, which highlighted the benefits of a “non-judgemental, non-prescriptive way to learn about weight management in an environment that was convenient, accessible and trusted”.

The identification of what is appropriate health care does not necessarily mean appropriate health care will be delivered. The health care system has to support health care professionals to deliver, and health care consumers to receive appropriate health care. So health services research is also concerned with the development of government policies to support the delivery and receipt of appropriate health care. Policy research covers issues around the financing and organisation of the health system.  For example, the government uses activity based funding to incentivise public hospitals to improve their performance, whilst health care homes aim to improve the quality of care provided by general practices.

Consumer participation is particularly important for health services research, with its focus on improving the health care services that consumers use. But how should researchers and consumers engage?

The National Health and Medical Research Council (NHMRC) published a Statement on Consumer and Community Involvement in Health and Medical Research in 2016, which “encourages researchers to consider the benefits of actively involving consumers in their proposed research”. The South Australian Health and Medical Research Institute (SAHMRI) undertook a comprehensive process of review and consultation to develop a Consumer and Community Engagement Framework, which was developed to “build the culture of acceptance and expectation of consumer participation in Institute research”. The implementation of the SAHMRI framework included a requirement for consumer engagement in all grant applications submitted from the Institute.

These are important steps, but forced or mandatory engagement can result in tokenistic actions. Recent reviews found very little evidence on the effects of consumer involvement in health research – we don’t know what forms of consumer participation in which areas of health research generate the greatest improvements in the delivery of health care. Such evidence is difficult to generate, but it is important to consider the expected benefits of participation because participation takes the limited time of researchers and consumers. We can start by thinking about the types of questions that consumers are best placed to inform.

What health care and health policies are acceptable? This question is clearly important because there is no benefit to developing health care and health policies that consumers do not value. A harder question is what health care and health policies are MOST acceptable? As an example, engagement with consumers around the management of obesity suggested a nurse-led program would be more acceptable than a GP-led program.

What effects and outcomes are important? When evaluating new health care or health policies it is important that evaluations measure effects or outcomes that are most relevant to consumers. As an example, evaluations of some programs to improve care at the end of life for residents in aged care homes reported the effects of such programs in reducing hospital admissions. Other evaluations collected data from residents’ families to describe the quality of the care received at the end of life. Which is most meaningful to consumers?

What health care is funded? Consumer participation should improve the research relevance, but implementation often requires financial investments by governments and health service providers.  Consumer and community representatives are well placed to assess the value of such investments relative to other potential uses of the resources required to fund new health care or health policies. State governments have increasingly been using Citizens’ Juries to inform policy decisions, such as Victoria’s Citizens’ Jury on Obesity. The Commonwealth government has established a Consumer Consultative Committee to improve consumer and community input to decisions about the public funding of new health technologies and services. We have proposed research to assess the feasibility of community panels actually making decisions, rather than providing input to decisions.

What research is funded? Like health care itself, research funds are limited and it is important that available funds are spent well. The NHMRC established a Community and Consumer Advisory Group in 2013, but committees of researchers still decide which research will be funded. Yes, researchers are best placed to judge the quality of most research proposals, but informed consumer and community representatives may be better placed to judge the relative importance and value for money of alternative high-quality research proposals. The Cancer Council NSW explicitly recognize the need to fund “research that is both of significant scientific merit and of value to the community”, with equal weighting given to the scientific review score and the Consumer Review Panel score.

Challenges to high-value engagement between researchers and consumers include the willingness and capacity of researchers and consumers to engage, the extent to which engaged consumers represent consumers who do not engage and the methods used to engage consumers. Greater involvement of consumers and community in decisions to fund new research and new health care and health policies is an important next step to address these challenges. Incentives matter. If consumers have real influence on decisions, researchers will have strong incentives to engage meaningfully with consumers. The need to demonstrate the value of consumer participation will lead to improvements in the process of engagement and avoid tokenistic engagement that wastes the time of researchers and consumers.

The importance of consumer participation has been recognised by research funding bodies and Australian governments and bold steps have been taken to promote researcher engagement with consumers. Yet bolder steps may be necessary to support meaningful consumer participation that delivers real value.