One of the criticisms in the academic literature was the lack of an evidence-based framework for consumer and community participation in health and medical research [6]. The literature review was designed to investigate which strategies for consumer engagement in health and medical research had been found to be effective. It was evident from the review that effectiveness of strategies used in consumer and community engagement in health and medical research is highly context-specific, and in many instances dependent on the attitudes, skill, and relationships between the consumers and researchers involved in the research process. Evaluation of strategies and comparative studies were hampered by lack of evaluation frameworks, as well as due to contextual issues such as policy and variations in utilisation of terminology, ideology, models of participation and methodology. There is variation in how the evidence of effectiveness of different strategies of consumer and community participation is evaluated and reported [6,7,8]. Many of the studies reviewed were qualitative in design and may not carry the same weight of evidence within the positivist paradigm of health and medical research [9]. There is generally inadequate reporting with a lack of valid and reliable tools [10]. Guidelines for the reporting of consumer and community engagement could improve consistency and comparability of studies.
The review identified two levels of organisational and research program activities that should be considered for consumer and community engagement in research (1) the conditions within research organisations that foster and support consumer and community engagement, and (2) strategies and actions used in a research program to enable consumer and community participation.
Four organisational dimensions are reported to contribute to success in consumer and community engagement, namely governance, infrastructure, capacity and advocacy [2].
Governance
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Structures: concerted efforts through the establishment of shared supportive structures.
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Policy: comprehensive organisation-wide policy, including acknowledgement of consumers as key stakeholders in all research; partnership roles decided through consultation between consumers, community and researchers, which are based on mutual respect for one another’s different knowledge and experience; and resources including a practice guide to support policy implementation.
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Research funding: ensuring that consumers have an influential and sustained voice in research funding decisions.
Infrastructure
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Consumer registers: registers of consumers, with experience working in research, advocacy and policy development, interested in research decision-making and support.
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Information: formal and informal support networks and resources and opportunity for consumers to share information and advice.
Capacity
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Consumer training: adequate support through training, education and resources appropriate to the expected roles.
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Researcher training: program for researchers to better understand the contribution that the community can make to the research as active partners.
Advocacy
Key themes identified through the stakeholder interviews included the importance of sustained leadership, the benefits of increased consumer engagement, that consumer engagement has a moral dimension that suggests it should be mandatory, and that consumer engagement should be varied and appropriate – there is no one size that fits all needs.
Challenges that emerged were that successful consumer engagement requires resources and funding, there are barriers to participation, how should consumer engagement adequately reflect the diversity of society, there are entrenched attitudes (positive and negative) to consumer participation, and there is divergence between a social view of health and a biomedical view of health.
The consensus workshop was used to reach agreement on a proposed framework and general endorsement of the development of a broad range of strategies to integrate consumer and community engagement in the research conducted at SAHMRI, building upon the findings of the literature review, stakeholder interviews and Partnership Steering Committee discussions.
The resultant Consumer and Community Engagement Framework incorporates the four organisational domains – governance, infrastructure, capacity building, and leadership and culture [2], the International Association of Public Participation’s Levels of Participation, from the basic level of informing through to the ultimate level of empowering, and the phases of health and medical research [7]. A diagram summarising the Framework is provided in Fig. 1.
The Framework includes 17 operational elements, grouped under the four organisational domains. Five early ‘wins” were identified to kick-start the implementation of the Framework, and to build the culture of acceptance and expectation of consumer participation in Institute research. These are (1) a series of community conversations, research forums and research showcases; (2) further develop strategic partnerships with consumer and community organisations aligned to each of the seven SAHMRI Research Themes; (3) develop a series of research priority setting partnerships; (4) make consumer engagement mandatory in all grant applications; and (5) incorporate consumer and community engagement into the organisational statement on values and culture.
A set of Principles, considered essential to underpin Framework, were agreed. These are that consumer and community engagement in health and medical research:
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is based on the understanding that those affected by research have a right to be involved in all aspects of research, from being research participants in studies, through to research priority setting and research governance;
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can and should, where possible, occur across all phases and stages of research;
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is based on partnerships between consumers, the community and researchers to determine research priorities;
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includes the promise that consumer and community contributions will influence research;
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is sustainable by explicitly acknowledging the needs and interests of all stakeholders;
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actively facilitates involvement, practically supports participation and seeks input from research participants in designing how they participate;
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communicates to participants how their input influences research (based on rigorous evaluation);
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provides opportunities for consumers, communities and community organisations to develop their capacity, abilities and skills.