Consumers and community members are increasingly being recognised globally for the value and contribution they can make to health research when involved as active partners in all stages of the research process i.e. identifying research priorities, conducting the research, disseminating the results and supporting the translation of results into policy and practice.
The Western Australian Health Translation Network was established in 2014 ‘to strengthen the health impacts of our outstanding research discoveries, to build a future legacy of research excellence and translation’. The Consumer and Community Health Research Network, an enabling platform of the WA Health Translation Network, will deliver and embed the Program of Work (Diagram2) to build the capacity of researchers, consumers and the community to work in partnership to support the goals of the WA Health Translation Network.
The Program of Work is underpinned by the National Health and Medical Research Council’s stated commitment for: ‘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’ (2016).
The UWA School of Population Health and Telethon Kids Institute (Founding Partners) established the Consumer and Community Involvement Program in 1998 in response to community concerns raised by the Health Consumers Council of WA about linked data research. The broad aim of the Consumer and Community Involvement Program was to enhance and increase consumer and community involvement at both organisations and it is now recognised as a good practice model nationally and internationally. Taking the model developed over 18 years by the Founding Partners, the Consumer and Community Health Research Network will translate and embed its Program of Work into the working practices of the WA Health Translation Network’s Partner Agencies. Funding for the establishment of the Consumer and Community Health Research Network has been provided by Lotterywest (2016-2019).
The structure of the Consumer and Community Health Research Network is outlined in Diagram 1 and will consist of: a Head, who will lead the Network; a Development Team, which will have responsibility for developing and maintaining the Consumer and Community Health Research Network’s Involvement Program (see Figure 2); the Delivery Team which consists of consumer advocates working within the WA Health Translation’s Partner Agencies to deliver the Involvement Program.
The Consumer and Community Health Research Network will be guided by a Community Advisory Council, which will have up to ten members including representatives from the Health Consumers Council WA, the Founding Partners, the WA Health Translation Network’s Management Committee, community members and the Head of the Consumer and Community Health Research Network. The Chair will be external to the WA Health Translation Network.
Program of Work
The Program of Work has six components and four key deliverables (outlined in Diagram 2) and its implementation across the Partner Agencies will be a staged process with three interconnected phases over the life of the grant.
Figure 2 – Program of Work
Phase One – establishing the Network
- Develop strategic framework, performance indicators and standard operating procedures for the Consumer and Community Health Research Network
- Organise and hold meetings between senior staff at Partner Organisations to identify Involvement Leads in organisation and negotiate Consumer Advocate requirements
- Establish a Community Advisory Group
- Deliver a series of introductory presentations about the Consumer and Community Health Research Network at Partner Organisations
- Recruit and induct Consumer Advocates for first implementation tranche i.e. Telethon Kids Institute, UWA, Perkins, Curtin and ECU
- Conduct training workshops for, consumers, community members and researchers in Partner Organisations
- Establish relationships with consumers, community members and researchers associated with the Partner Organisations
- Develop tools to support Consumer Advocates at Partner Organisations
- Continued development of networks with a range of stakeholders at a state, national and international level.
Phase Two – implementing the Involvement Program
- Audit consumer and community activities in Partner Organisations
- Develop planned strategies for involvement at Partner Organisations
- Implement consumer and community involvement activities
- Continue to build relationships with researchers, consumers and community members
- Report on outputs and activities
- Continue to offer training workshops to researchers, consumers and community members
Phase Three - assess the impact
- Assess impact of involvement strategies across the Partner Organisations
- Report on overall outputs and achievements of the Consumer and Community Health Research Network