Welcome to the third and final blog in our three-part equity series, in which we focus on the ‘why’, ‘how’ and ‘when’ consumers and communities are engaged in the many stages of health and medical research in Australia.
We consider i) the range of mechanisms and equitable processes employed by NHMRC to engage consumers in its legislated functions and ii) how consumer and community engagement can be embedded throughout the research lifecycle. We also consider how Investigator Grant applicants can operationalise the scheme’s guidelines regarding consumer participation.
Placing consumer needs at the centre of research
Engaging consumers in research
· identifies and prioritises issues of importance to them
· enhances the communication of research findings
· leverages the translation of research findings into practice, healthcare delivery and/or policy
· facilitates the investment of resources into research that has the highest potential of positive outcomes and impact for consumers.
Understanding the benefits of consumer engagement is foundational to increasing the relevance of research to end users, which requires a shift towards being consumer-centred, and, potentially, consumer-driven.
Decision-making ‘with’ consumers not ‘for’ them
In Australia, participating in decisions that impact on an individual's own health is an ethical right. Where individuals choose to do so, engaging in health and medical research on a broader level is also a right.
However, without mechanisms that enable and facilitate engagement the potential to meaningfully contribute will be hindered. In addition, it is key to effectiveness that consumer engagement mechanisms are not tokenistic but active, participatory, collaborative, and meaningful.
As we discussed in the first blog of our equity series, equity is a process founded in fairness, whilst equality refers to a fair and just outcome.
To ensure fairness in 'how' consumers can engage in health and medical research, there must be i) diversity in potential roles and responsibilities, and ii) variance in the extent of time and levels of input expected. Recognising and valuing consumer engagement in research underpins efforts to ensure diversity in potential roles.
So, what value does NHMRC place on consumer engagement in research?
NHMRC’s mechanisms to engage consumers
A search of NHMRC’s website using the phrase ‘consumer and community engagement,’ or similar terms, will be rewarded with the following statement:
National Health and Medical Research Council (NHMRC) understands the importance of engaging with consumers and the community on its role and activities, whilst also providing leadership and guidance to the health and medical research sector on the meaningful engagement of consumers throughout all stages of research and health care. (Consumer and community engagement | NHMRC)
NHMRC’s efforts to encourage and promote consumer engagement in research are long-standing, in fact, NHMRC has been engaging consumers for the last 20 years as part of their statutory responsibility under the NHMRC Act 1992 (the Act).
To operationalise its responsibilities, NHMRC:
· adopts a policy of ensuring a 30-day public consultation period for all guidelines, as identified in the NHMRC Regulations 2006
· routinely appoints consumers to NHMRC Council and Principal Committees and involves them in working committees and reference groups to advise on various issues
· established the Consumer and Community Advisory Group (CCAG) which provides strategic advice to NHMRC's Chief Executive Officer on health and medical research matters from a consumer and community perspective
· has been trialling the involvement of consumers in peer review for selected grant opportunities since 2017 (although consumers are not involved in the formal scoring of applications)
· co-developed, with the Consumers Health Forum of Australia Ltd (CHF), and released the Statement on Consumer and Community Involvement in Health and Medical Research (the Statement) in 2016 to "...guide research institutions, researchers, consumers and community members in the active involvement of consumers and community members in all aspects of health and medical research. (Consumer and community engagement | NHMRC)
Embedding the consumer in Investigator Grant proposals
Researchers have a direct role to play in ensuring fair and just outcomes from research for end users, and this is by facilitated by ensuring that, where possible, the processes of conceptualising, prioritising, designing, developing, implementing, disseminating and evaluating health and medical research have equitable involvement of consumers.
It may be helpful to think about consumer engagement as decision making ‘with’ or ‘by’ consumers, rather ‘to’, ‘about’ or ‘for’ them.
Within the 2022 NHMRC Investigator Grant guidelines (p 29) it is recommended that applicants "...consider the benefits of actively engaging consumers in the planning and preparation of grant applications, the conduct of research and the evaluation of outcomes".
It is reasonable to expect a similar inclusion within the impending 2023 guidelines, so let's focus more closely on how this guidance can be operationalised.
Consumer involvement in the planning and preparation of grant applications can be visualised in the image presented below (Fig 1), reproduced from NHMRC's Framework for Effective Consumer and Community Engagement in Research (part of their Toolkit for Consumer and Community Involvement in Health and Medical Research) which was co-developed with NHMRC's CCAG.
Fig 1: Image from www.nhmrc.gov.au
To maximise the value of research, the framework indicates that researchers should build relationships with consumers with whom the research idea is subsequently developed and agreed upon. Common terms used for consumer engagement during initial stages of the research journey include co-design, co-development, and/or co-production.
For those undertaking research with Aboriginal and/or Torres Strait Islander Peoples, NHMRC provides researchers with a set of six core values that underpin the necessary collaborative approach to priority identification, research planning, development, production and implementation (Ethical conduct in research with Aboriginal and Torres Strait Islander Peoples and communities | NHMRC):
· spirit and integrity
· cultural continuity
Adhering to these values from the very early stages before project conceptualisation ensures that all human research undertaken with Indigenous Peoples respects their shared values, and is relevant for their priorities, needs and aspirations.
Now let’s turn to the phrase in the excerpt from the Investigator Grant guidelines that reads "...actively engaging consumers in ... the conduct of research...".
There exist a wide range of approaches and methodologies that embed consumers within the activities of a project. Participatory action research (PAR) is an approach that, in simple terms, means that researchers and consumers work together to understand a research problem, identify a way to address it, and take action to solve it.
There exist a wide range of methods that engage consumers in research, each underpinned by the PAR approach.
One example, citizen science, involves consumers as part of the research team who assist with data collection and/or data analysis.
Inclusive research, while also engaging consumers as part of the research team, focuses on engaging individuals that have commonly been excluded and/or under-investigated, for instance those with a lived experience of disability. Ensuring that special needs and accessibility issues are accommodated, methodological processes are appropriate, consent and comprehension processes are fair and supported, and extra time is provided within timelines and embedded throughout the project enables individuals with the greatest burden of exclusion to have greater capacity to influence the potential impact of the research.
Group model building, although time- and resource- intensive, is increasingly employed to build capacity in consumers to understand complex problems, engage in systems thinking to identify multifaceted pathways related to the problem and develop consensus for potential actions, design and potentially implement equitable, sustainable solutions.
Fig 2. Image by Gerd Altmann - Pixabay
Regardless of the methodologies employed, a significant investment of time is required to support consumers through the engagement process, all of which will result in increased acceptability, feasibility, and effectiveness of the research. Here we can see that equity in the research process, whereby the consumer voice is on equal footing with the researcher, is, in addition to being ethical, more likely to result in quality outcomes.
The final key point in the Investigator Grant guidelines excerpt is "...actively engaging consumers in … the evaluation of outcomes”.
Within NHMRC’s Toolkit (Consumer and community engagement | NHMRC) are four tools that evaluate consumer engagement in research:
· Measuring Alignment with Consumer and Community Expectations in Research
· Measuring Effectiveness of Consumer and Community Involvement in Research
· Considering Impact of Research from a Consumer and Community Perspective
· Self-assessment of Consumer and Community Involvement in Research.
Use of the toolkit is encouraged by NHMRC and offer an extra layer to the comprehensive evaluation of research projects that is uniquely focused on processes, alignment, effectiveness, impact and perceived value of consumer engagement.
Hearing, valuing and acting on the consumer voice
It could be agreed that without NHMRC’s active fulfilment of its legislated responsibilities, the consumer voice in health and medical research would be far less heard.
Researchers’ direct efforts to actively engage consumers is further contributing to the shift towards research being consumer-focused and/or consumer-driven: a movement notably leveraged on a national scale by the funding policies of NHMRC, and other entities, that encourage, promote and value the meaningful participation of consumers in research.
As potential applicants prepare for the 2023 Investigator Grants round to be opened, NHMRC and the CHF are poised to begin a review of the 2016 consumer engagement statement. Given NHMRC’s strategic focus on equity in research, we can expect that the subsequent version of the Statement will continue to be founded on equitable and inclusive processes.