Health and medical research comprises a series of stages through which scientific discoveries and evidence generated in laboratory or academic settings are transformed into practical applications that enhance health outcomes, inform policy, and improve clinical practice.
Health and medical research is not always straightforward- feedback and learning often flow in both directions. It is increasingly recognised that consumer and community involvement should be embedded throughout the process to ensure relevance, equity, and impact. There is no one-size-fits-all approach; however, when involvement is genuine, respectful, and well-supported, it delivers benefits for researchers, consumers, the research process, and the broader organisation and community.
For researchers working in discovery and basic research, where the direct impact on human health outcomes is unclear, understanding the best way to engage and involve consumers requires planning. While genuine, respectful, and well-supported involvement delivers benefits, engaging directly with consumers needs to be carefully considered and tailored.
Discovery and basic research are inherently complex and abstract. They carry the risk of generating unrealistic expectations about health outcomes and may cause emotional distress if misunderstood or misrepresented. While this is true of all research, discovery and basic research follow a longer and less certain path before they may lead to improvements in human health.
Seek guidance and/or training from people knowledgeable about CCI on the most suitable way to connect and engage people prior to involvement to facilitate a safe, valued, and meaningful process. The case study, ‘Bridging Science and Community’, provides an example of a partnership between a consumer and basic science researcher.
The Walter and Eliza Hall Institute of Medical Research (WEHI) is a medical research institute located in Melbourne, Australia. Much of WEHI’s research is laboratory-based, with a strong emphasis on discovery and basic science research. In 2012, the WEHI established a Consumer Buddy Program to enhance research through meaningful partnerships between researchers and consumers. The program is governed by a Consumer Advisory Panel and has undergone formal evaluation. Key elements for success in a research institute setting include:
- Organisational commitment and resourcing.
- Consumer and community involvement requires strong organisational support, including formal governance structures and dedicated investment in coordination, management and evaluation.
- Good relationships and partnerships are essential, with well-matched consumers and researchers and clear management of expectations.
- Contributions from consumers should be acknowledged meaningfully and consistently.
- Consumers should be involved as early as possible in the research process to shape priorities and design.
- A diversity of consumer voices should be sought to reflect the broader community and the intended beneficiaries of research.
- Systems and support for relationship and program management, as well as for ongoing evaluation and improvement.
- Both researchers and consumers benefit from training and ongoing support to build capacity and confidence in consumer and community involvement.
Source: Smith, R. 2021. Increasing Consumer and Community Involvement in Medical Research. A Short Guide for Medical Research Institutes. Melbourne, Melbourne Academic Centre for Health.
There is no one-size-fits-all approach to consumer and community involvement. Here are some practical ways to engage consumers in laboratory-based research:
It Starts With A Conversation
- At the heart of effective consumer and community involvement is a commitment to openness and mutual learning, and a mindset that embraces opportunity.
- The relationship is the ‘must-have’ – this takes time to develop (sometimes many years).
- Develop the relationship by meeting and talking, or simply catching up over a coffee to get to know each other.
- In the Success Story ‘Bridging Science and Community’, Sue Hayes, a cancer survivor, and Dr Yu Suk Choi, an associate professor at University of Western Australia, reflect on their relationship.
- Discussing both work-related and personal topics, fosters a deeper connection between consumers and researchers.
- Connect with peers who are also engaging with consumers to exchange ideas and encouragement.
Identifying and Aligning with Community Priorities
- Engage with consumer/community organisations relevant to the research area.
- Use existing literature and reports to identify/confirm community priorities. These priorities can be confirmed by other means, such as engagement with consumer partners, consumer advisory panels and relevant networks.
Support and Communication
- Develop the ability to clearly communicate your research using plain language that is accessible and engaging to non-expert audiences.
- Develop jargon-free, plain-language summaries in accessible formats.
- Share research findings through relevant consumer networks to support broader reach.
- Acknowledge the valuable contributions of consumer partners, and maintain regular but balanced communication to ensure they feel engaged without being overwhelmed.
Roles Consumers Can Play
Consumers have a vital role to play in shaping research priorities, contributing to the planning and development of research directions, and supporting the communication and dissemination of research outcomes:
- Facilitate Connections with Diverse Communities
- Support researchers in building relationships with underrepresented or priority populations relevant to the research area.
- Contribute to Ethics and Grant Submissions
- Provide input on ethics applications and funding proposals, including lay summaries, impact statements, and community relevance.
- Participate in Governance and Advisory Roles
- Join steering committees, ethics boards, grant review panels, or PhD selection committees to offer lived experience and community perspectives.
- Support Research Translation and Dissemination
- Help communicate findings in accessible ways and ensure they reach the communities who can benefit most.
- Shape Future Research Directions
- Engage in discussions about emerging needs, translational opportunities, and long-term research impact.
- Co-Develop Evaluation of Consumer and Community Involvement Activities
- Collaborate in assessing the effectiveness of consumer and community involvement and identifying areas for improvement.