Mater Research Strategic Framework for Consumer Engagement

To deliver better health outcomes through substantive and bi-directional partnering with consumers in research projects including clinical trials designed with or by consumers. The strategic framework aims to establish a best practice model for facilitating partnerships between consumers and Mater researchers and clinicians through provision of an organisation-wide consistent approach to consumer engagement across our five Research Programs and clinical trials focus areas. 

To support partnerships between Mater researchers, clinicians and consumers in the planning, design, delivery, measurement and evaluation of care in accordance with Standard 2 of the National Safety and Quality Health Service (NSQHS) Standards and the National Clinical Trials Governance Framework (NCTGF). This applies across all stages of the research cycle, including prioritisation, design, conduct, dissemination, translation, implementation and evaluation of research. The strategic framework is in accordance with the Australian Medical Research and Innovation Priorities, the Medical Research Future Fund (MRFF) Principles and the National Health and Medical Research Council (NHMRC) Statement on Consumer and Community Involvement in Health and Medical Research. 

The strategic framework outlines six key objectives as well as implementation tips for practical integration. Each objective is designed to ensure that the contribution and value of consumers in health and medical research is better understood and recognised, thereby encouraging researchers and clinicians to initiate engagement with consumers at the outset of research projects including clinical trials.

1. Promote diversity and inclusion focused approaches to form consumer and researcher/clinician partnerships in a culturally safe environment. 

2. Establish a Health Research Consumer Network to strengthen partnerships between consumers and researchers/clinicians and enable access to a diverse network of consumers. 

3. Enhance capacity and capability of consumers to empower them to confidently make meaningful contributions to research projects by removing barriers to participation.
4. Enhance capability of researchers, clinicians and clinical trials staff to undertake effective, fit-for purpose engagement with consumers and community organisations.

5. Establish and implementation of a consistent organisation-wide consumer remuneration and expense reimbursement policy.
6. Embed a consistent organisational reporting process to increase visibility of consumer engagement activities across research teams and provide evidence of the impact and value of engaging consumers in research and clinical trials. 
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To read more about the objectives, and tips for practical integration, click here. 

Processes through which consumers and the community actively partner with researchers and health professionals to co-design research projects, including clinical trials. The purpose is to ensure research activities are guided by end users to guide the purpose of the study, influence how they are conducted, how the outcomes are shared and/or applied in practice. Consumers can contribute through sharing their opinions, concerns, needs, and aspirations based on lived experience of a health condition or health service.

• One way and tokenistic – Seeking agreement from consumers and the community on pre-determined decisions without learning from them through meaningful partnerships. 

• Only completed with easy to reach consumers using the same few voices to represent the entire community – research impact and outcomes must be appropriate and beneficial for all. This cannot be done without engaging consumers from a variety of backgrounds with varied opinions and ideas. 
• A single process – Engagement needs to occur in multiple ways over a course of multiple interactions. For example, organising an annual on-line survey to hear from the community or involving one or two consumers on a high-level strategic project committee would not normally be deemed meaningful consumer engagement. 

Health consumers are individuals who have a lived experience of a particular disease, illness, or health condition, or use health care services, as well as their family, friends, and carers. A health consumer can be a member of the public representing their individual view or a representative expressing the views of a community group. Involving health consumers in research ensures their lived experiences and perspectives help shape priorities, policy and practice leading to research which is more relevant and impactful to the community.

Consumers may be expected to have an in-depth knowledge of health conditions they have experienced or evidence for treatment and models of care, but they should not be expected to have a research or clinical background. It is the responsibility of the researchers and clinical trials teams to ensure that technical information about the research project and/or clinical trial is explained to consumers where necessary to enable effective partnerships.

It is recommended that researchers, clinical trials staff and participants associated with a specific research project do not take part in the project’s engagement activities.

• We will seek the views and insights of consumers, and work with them to ensure that the diversity of people giving their views, reflects the diversity of the local population.
• We will provide consumers with information that is clear, jargon free and accessible.
• We will ensure consumers are adequately supported in their role as part of the research team. 
• We will be clear about what decisions the consumers voice will have a clear role in influencing.

Consumer engagement may pose a low level of organisational and operational risk. Awareness of the risks may enable mitigation strategies to be formulated through formal training of consumers, researchers, clinicians and clinical trials staff.

• Consumers experiencing a strong emotional effect while sharing their lived experience with researchers or reviewing documents including survival statistics, treatment side effects, etc. 
• Consumers with physical injury or fatigue receiving more unintentional attention and empathy during interactions with researchers and clinicians due to the ‘visible’ nature of the injury, compared to those with cognitive impairment, especially in case of patients with brain injury.
• Consumers expected to have high level of scientific knowledge and understanding of medical terminologies and technical jargons without adequate assistance from the researchers.  
• Consumer role perceived by researchers and clinicians as not value-adding to decision-making, or by the consumer partner as tokenistic when sufficient time is not allocated to form meaningful partnerships.
• Consumer feedback may not be included in the research project by researchers without providing valid reasons for inclusion or exclusion of feedback, and lack of time and commitment to keep consumers informed about the outcomes.