Why involve consumers?

Why involve consumers?

The reasons for involving consumers and the community in clinical research are many and varied. Some of these are described below

It is a right for all Australians to have a say in the planning and implementation of their health care, (International Conference on Primary Health Care, Alma-Ata, 1978), which also means having a say in health research.

Since 2002, the joint NHMRC and CHF Statement has endorsed community and consumer involvement in health and medical research. Internationally, foundational ethical and social frameworks for health, and medical research, are rapidly evolving to recognise the importance of an active role for people in health-and research-related decision-making processes.

At the 77th World Health Assembly in May 2024, member states (including Australia) endorsed a resolution to implement, strengthen, and sustain regular and meaningful social participation in decision-making processes for health. The Declaration of Helsinki October 2024 update included: “Meaningful engagement with potential and enrolled participants and their communities should occur before, during, and following medical research. Researchers should enable potential and enrolled participants and their communities to share their priorities and values; to participate in research design, implementation, and other relevant activities; and to engage in understanding and disseminating results.”

Consumers’ knowledge of living with and managing a health condition and its impact on their lives, is a valuable complement to clinical knowledge of these conditions.

Lived health expertise can provide researchers with different insights about a condition, and the gaps, challenges, and opportunities for care. This can help researchers design trial aims and outcomes that are important and relevant to people who live with a health condition (referred to as patient-reported outcome measures [PROMS]). Additionally, it can improve the participation experience and reduce the burden of participation, enhancing the potential for recruitment (see box). Partnering with consumers meaningfully and transparently provides an opportunity to build trust and social license for research. It also helps with the dissemination of research findings and offers valuable feedback on what the community perceive of their work.

The Outcome Measures in Rheumatology (OMERACT) group defines core outcome measurement sets in rheumatic diseases. The active involvement of consumers in OMERACT since 2002 has led to a more consumer-influenced research agenda in rheumatoid arthritis and new outcome domains being identified (de Wit et al., 2013).

One such outcome is fatigue. It was not until consumers at OMERACT meetings raised the topic of fatigue as an important but neglected symptom of their condition that researchers began to consider fatigue in studies. Research in rheumatoid arthritis since has included the prevalence and severity of fatigue, the rigour of existing fatigue measurement tools, and the need to develop better, patient-derived tools (de Wit et al., 2013). OMERACT eventually added fatigue to the core outcome measurement set for rheumatoid arthritis.

The NHMRC and CHF clearly articulate the value that consumer involvement adds to health and medical research in their ‘Statement on Consumer and Community Involvement in Health and Medical Research’ (currently under review). The Statement’s formal vision is of “consumers, community members, researchers, and research organisations working in partnerships, to improve the health and well-being of all Australians through health and medical research.”

The Statement also says that:

  • Research informs health-care decisions, and that research institutions, researchers, consumers, and community members should work collaboratively to support, facilitate and value the contribution that consumers and community members make to research, and its development, conduct, and communication.
  • As beneficiaries of advances in health care, consumers and community members have an interest in promoting the translation of research into improved policy and practice. It follows that health and medical research should develop processes and systems to incorporate and support sustainable consumer and community involvement.

In 2020, the NHMRC released a suite of resources to assist researchers to involve consumers in research.

Increasingly funding bodies (e.g. NHMRC, Medical Research Future Fund (MRFF) and many charity organisations) are requiring researchers to demonstrate how consumers will be involved in their research.

In 2023, the MRFF Consumer Reference Panel published a set of principles for consumer involvement in research funded by the MRFF.

These principles state that consumers should be involved:

  • In every type of research
  • At all stages of research
  • In partnership with researchers
  • Effectively
  • Sensitively and safely
  • With broad diversity and equity.

They also note that “While consumer involvement is not a requirement of MRFF funding at this time, it is nonetheless expected and viewed favourably in the assessment of MRFF grant applications”.

Resources

  • A list of the many reasons why researchers and research organisations should involve consumers, including better trial relevance, quality, and recruitment, can be downloaded here: ‘reasons to involve’.
  • Consumers and community members benefit from being involved by having a better understanding of research in the community. This includes taking an active role in their health care and learning new skills. More information can be downloaded here: ‘benefits for consumers and the community’

Further reading

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