Objectives

Effective consumer engagement relies on tailored approaches that are inclusive, respectful, transparent and collaborative empowering consumer partners as equal contributors in the research process. Building trusting relationships with consumer partners taking into consideration the diversity of consumers, including but not limited to, priority and hard-to-engage population groups, is central to creating a culturally safe environment for consumer engagement.

Priority and hard-to-engage population groups often have specific characteristics, circumstances, preferences and requirements and may be identified as Aboriginal and Torres Strait Islander people, culturally and linguistically diverse (CALD) communities and individuals, sexuality and gender diverse people (LGBTQIA+), people living with mental illness, people from low socioeconomic backgrounds, people with physical and cognitive disability, regional and remote populations, children and youth, and the elderly population. 

Trusting partnerships and inclusive opportunities for consumer engagement in research are established over time through ongoing connections, mutual respect and agreement, and a clear understanding of the engagement purpose and potential outcomes. These partnerships cannot be instantly attained and need to be mutually beneficial and reciprocal to consumers and researchers. Siloed consumer engagement and over engagement have the potential risk of the same consumers or community groups being approached on multiple fronts, and in some cases, on the same or similar issues and areas of research.

Implementation tips for practical integration

• Value the contributions of consumers, community voices and cultural advisors and be open to learning from them through engagement as a facilitator and not a driver of engagement. 
• Avoid tokenism through engagement with consumers early on in the research cycle even when it does not immediately translate into research outcomes. 
• Actively listen and ask questions to understand the immediate and emerging needs and broad range of topics that are important to the consumers and communities.
• Employ inclusive and culturally appropriate processes that invite diverse participation and include voices normally excluded from decision-making by connecting with hard-to-engage consumers and identifying where they place their trust. For example, existing networks including local community organisations that have already spent time building trust and relationships with a specific group of consumers.
• Explore where, when and how consumers will be most receptive to engagement approaches and tailor engagement processes accordingly to avoid treating them as generic or homogeneous groups.
• Foster two-way feedback loops to provide consumers with timely information and opportunities to provide input into stages of the research cycle ensuring a transparent engagement process and relationships. Regularly check with consumers how they feel about the process and what can be improved.

Consistent consumer engagement practices ensure that research being undertaken is fit for purpose, high quality, trusted by the community and efficiently delivers the best possible research outcomes for improving the health and wellbeing of end-users. Internationally, health and medical research principles and guidelines, for example, the World Medical Association (WMA) Declaration of Helsinki, are rapidly evolving to recognise the importance of the active role of consumers in decision-making processes before, during and following health and medical research. Since 2002, the joint NHMRC and Consumers Health Forum (CHF) Australia Statement  has endorsed consumer involvement in health and medical research. The Australian Medical Research and Innovation Strategy 2021-2026 mandates that research is driven by meaningful consumer and community engagement to incorporate their diverse priorities, needs, values and experiences to deliver outcomes that are accessible and useful to end-users including patients, carers, health care professionals and others.

Similarly, the Partnering with Consumers Standard (also known as Standard 2) of the National Safety and Quality Health Service (NSQHS) Standards aims to create health service organisations where patients are equal partners in their own care to the extent they choose, and are engaged in the planning, design, delivery, measurement and evaluation of systems and services, for example, clinical trials. The Partnering with Consumers Standard also emphasises on the provision of clinical governance and quality improvement systems to support partnering with consumers, healthcare rights and informed consent and health literacy of patients. Read the Mater Research Clinical Governance Framework here.

The Mater Research Health Consumer Network has been established to implement, strengthen, and sustain regular and meaningful consumer engagement in research and clinical trials at Mater. The network aims to provide researchers and clinicians with timely and improved access to consumer partners from diverse backgrounds, age groups (16 to 75+ years) and lived experience of one or more health conditions aligning with our Research Programs.

Implementation tips for practical integration

• Present consumer network with a clear explanation of the scope and context of the research project prior to engagement and during consultation and involvement.
• Clearly communicate and ensure understanding of the level of influence and ownership consumers will have, including what is out of their hands, so consumers can understand how their input is valuable.
• Take an authentic, holistic, iterative co-design approach and interact with humility and empathy throughout the engagement process and activities, recognising lived experience as expertise the consumer network is bringing on the table.
• Provide cultural, physical, ethical, psychological and emotional safety for all consumers involved in accordance with Objective 1 of the framework. 
• Try to avoid the convenience of approaching the same consumers in the network who are more motivated than others to always participate. 
• Continuously review and improve engagement strategies with the consumer network to ensure they are meeting the expectations of the active members.
• Factor in the time it takes to develop trust for meaningful collaboration, consumer ownership and empowerment, particularly for hard-to-reach and hard-to engage consumers.
• Be open to authentic conversations with the consumer network and listening to their needs without feeling compelled to provide immediate answers and solutions.

Meaningful consumer engagement requires advancement of consumers beyond the role of passive research participants to a position of active contributor and co-partner in research. Consumers, therefore, need to have access to appropriate training resources to develop their capacity and capability to engage effectively. Training of consumers depend on the type and level of involvement as per the IAP2 spectrum and their level of experience. While consumers who are involved in one-off activities, such as completion of surveys, participation in interviews or discussion groups, etc. may not need formal training, when consumers partner with researchers and clinicians on a regular basis in various stages of the research cycle, training and ongoing support are essential to ensure consumers have the skills and confidence to successfully contribute to research and clinical trials design.

At Mater Research, our aim is to ensure that consumer engagement is a standard practice across our five Research Programs. As such, we have developed online training resources in consultation with our Health Consumer Network and experienced consumer advocates for increased consumer capacity building allowing for greater transparency and accountability leading to research that is more relevant and impactful to the community. Our online training resources have been divided into beginner, intermediate, and advanced modules designed to introduce consumers to the foundational concepts of consumer-driven research; explore how consumers can actively participate in research co-design; and equip consumers with the skills to lead and advocate within the research landscape.

Please email consumer.training@mater.uq.edu.au to access the links to the online training modules. Complete the short form here upon completion of the online training module(s) to claim your certificate and provide feedback. 

Implementation tips for practical integration

• Equip consumers with access to appropriate resources and training to enable them to participate and contribute with confidence and understanding based on their experience level. 

• Provide consumers with training opportunities to upskill themselves to influence policies, champion practices, and drive research initiatives for sustained consumer engagement within research teams. 
• Embed consumer education and training in organisational policies, procedures and frameworks to ensure a planned, purposeful and systematic approach to consumer engagement in research and clinical trials design. 
• Utilise fit for purpose multi-modal engagement approaches and mechanisms for consumer training. Be mindful of the ‘digital divide’ as online platforms may not be the optimal means for some consumers to undertake training. 
• Provide additional familiarisation and training for those less confident with digital platforms to incentivise and enhance participation, for example, a digital literacy introductory course or resources may be offered to consumers prior to seeking engagement through digital platforms.
• Ensure that the training provided meets the specific needs of consumers by asking them about their requirements. Provide them with the opportunity to discuss their role in the research project, including opportunities for any further training and support needs.
  • Seek consumer feedback in the planning, design, delivery, and evaluation of training resources as an opportunity for continuous improvement and understanding how they might be supported better.

Partnering with consumers is increasingly becoming mandatory for accreditation and reporting purposes at the state and national levels and is included in the NSQHS Standard 2. Consumer involvement in their own health care is also an essential component of the Australian Charter of Healthcare Rights. Involving consumers in the research process, including clinical trials design, leads to improved health outcomes and a more trusted investment of public money through national funding agencies. Consumer involvement in the research process is different to being involved as a participant in a research study or randomised control trial measuring effectiveness of a new intervention or treatment. For example, when researchers engage with consumers to design tools such as surveys and questionnaires for research data collection, the outputs are better received by the research participants, and researchers and clinical trials staff are likely to collect more meaningful data to inform their study design.

It is essential that our researchers and clinicians understand why they need to engage with consumers, are adequately trained to partner with them and can identify the type of consumers who can meaningfully contribute to their research. At Mater Research, we are constantly working towards establishing processes to assist our researchers and clinicians engage with consumers. We are co-designing with expert consumer advocates online training modules for researchers, including clinical trials staff, to provide them with foundational knowledge to start engaging with consumers (beginner module), enable them to integrate consumers throughout the research cycle (intermediate module) and equip them to lead strategic consumer collaborations in research projects (advanced module). The training modules for researchers and clinicians will be available in Q2 of 2025. 

The lived experiences of consumers enhance novel external perspectives and understanding of challenges adding value to the relevance and appropriateness of the research question. Appropriate consideration of issues that are important to patients and the community enhances uptake and dissemination of research outcomes improving decision making processes and health outcomes for consumers. Active contribution and expertise of consumers require a significant investment of time and effort which needs to be recognised through remuneration in the form of honorarium payments, and reimbursement for travel and out of pocket expenses.

Payment helps legitimise consumers role by valuing the skills and lived experience they bring to the research project. It can be a means of demonstrating that their involvement and contribution is valued and taken seriously. In addition, remuneration may stimulate performance and productivity, ensure consistency and sustainability, and encourage long-term commitment by the consumer. More importantly, it positions the consumer on an equal footing with others in the research team making their opinion as equally valuable and mitigating the risk of creating a divide between researchers as the technical experts and consumers as members of the community.

Mater Research recognises the importance of engaging with consumers to help shape research priorities, policy, and practice and has an organisation specific Health Research Consumer Remuneration and Reimbursement Policy and Procedure built into this framework to help researchers, clinicians and clinical trials staff remunerate consumers involved in research projects, including clinical trials. The consumer remuneration rate in the policy and procedure document is consistent with the Health Consumers Queensland Remuneration guidelines. An efficient consumer payment process is in place to further remove any financial barriers to consumer participation in research.  

Find the Health Research Consumer Remuneration and Reimbursement Policy and Procedure here and the link to the Payment Requisition and Honorarium Declaration Form here.

Implementation tips for practical integration

• Allocate annual budget for consumer engagement activities in research projects so that remuneration can be offered when required and appropriate.

• Be open and transparent to consumers at the beginning of the engagement activity regarding remuneration and reimbursement offerings and processes including timelines to meet their expectations. 
• Explain the intent, expectations and limitations of the engagement activity and communicate the level of influence and ownership consumers will have, including what is within their scope of work, ensuring clear understanding of their role in the research project and associated remuneration process.
• Hardwire systemic approaches through formal means such as remuneration for active contribution and reimbursement for travel and out of pocket expenses, so that consistent consumer engagement processes can be implemented across research programs.
• Explore ways to keep continuity of partnerships between consumers, researchers and the organisation, such as providing free training opportunities and incentivising participation in workshops, events, etc.
• Provide information to consumers to empower them to engage in a meaningful and equitable way. Ensure identification and declaration of any perceived or actual conflicts of interest throughout the engagement process.

Consumer engagement in research including clinical trials is increasingly recognised as a crucial component of the various stages of the research cycle. Therefore, embedding consumer engagement reporting processes and standardised tools is important to evaluate program impact and success at an organisational level. 

In alignment with Standard 1 (Clinical Governance) and Standard 2 (Partnering with Consumers) of the National Safety and Quality Health Service (NSQHS) Standards, Mater Research has incorporated consumer engagement reporting in its research governance review process, also known as site-specific assessment (SSA), and annual and final progress reporting via the Ethical Review Manager (ERM) system implemented at an organisational level. ERM is the online platform used for submission and review of all applications to the Mater Human Research Ethics Committee, the Mater Research Governance Office and the Mater Research Early Phase Clinical Trials Expert Advisory Committee. 

To minimise researcher workload and ensure identification of consumer engagement activities in research projects, researchers will now be required to address additional questions on current and future partnerships, number of consumers engaged and at what stage(s) of the research cycle, including prioritisation, design, conduct, dissemination, translation, implementation and evaluation. For more information, visit the Mater Research Ethics and Governance page.

Implementation tips for practical integration

• Set specific, measurable, and timely consumer engagement objectives in research projects, and compare the relative success of different approaches. Determine at what stage(s) of the research cycle consumer engagement has taken place.

• Request feedback from consumers on how well they understood the engagement objectives at each research stage, whether these were met and how they influenced the project.
• Request researchers and clinical trials staff to provide feedback on how consumer involvement activities have influenced the project.
• Monitor and evaluate the impact of delivering consumer engagement activities and identify areas of improvement.
• Ensure documents, such as terms of reference (ToR), role descriptions, etc. clearly specify tasks to be undertaken by consumers engaged in a research project including clinical trials design.