National Collaboration Builds Capacity and Advances Implementation of Consumer and Community Involvement
A national collaborative effort by AHRA members is accelerating the implementation of best practice Consumer and Community Involvement (CCI) in Australia, at a time when government and funding bodies are requiring greater consumer involvement in health and medical research.
AHRA Research Translation Centres (RTCs) are working together to build a network of engaged consumers, community and citizen scientists, including underserved populations.
AHRA CCI Co-Lead and Chief Operating Officer of Monash Partners Academic Health Science Centre, Dr Angela Jones, said the Alliance’s work is building the evidence base for what good CCI means.
“CCI is not a one size fits all but there are certainly fundamental principles that need to be practised,” said Dr Jones. “In the absence of AHRA collaboration there may have been siloed, organisational level approaches, with the potential for inconsistency, duplication of effort and waste of vital resources.”
After 5 years of developing CCI capability and capacity, through grant and in-kind contributions by the RTCs, in 2023 AHRA received a $1 million grant from the Medical Research Future Fund. The grant is led by Monash Partners, Western Australian Health Translation Network (WAHTN) and Maridulu Budyari Gumal (SPHERE).
Research funded by the grant will build a network of engaged and upskilled consumers, including members of under-represented community groups such as Aboriginal and Torres Strait Islander people.
AHRA CCI Co-Lead and Manager of Strategic Projects at WAHTN, Jo Wilkie, said AHRA’s formation of a national network recognises the importance of making consumers active and valued partners in shaping and delivering research and its translation. “The network’s research aims to generate new knowledge about CCI, apply behavioural science to understand how to change entrenched behaviours and attitudes towards CCI – and develop an online hub to consolidate evidence-based resources – surrounded by a community of practice and supported by mentoring,” she said.
Head of the CCI Program at the Western Australian Health Translation Network (WAHTN), Debra Langridge said the MRFF grant recognised years of work undertaken by AHRA.
“This funding builds on work led by the Research Translation Centres over a number of years and is an exciting opportunity to work together and build a national knowledge hub to strengthen consumer and community involvement,” said Ms Langridge.
SPHERE’s Acting Executive Director, Professor Chris White, said the knowledge hub will not only help to build a network of engaged and upskilled consumers, but will also reflect the value of engaging consumers and community in research.
“Although the number of questions we, as researchers, can ask is infinite, our community tells us the most important questions they need us to answer,” Professor White said.
“Our shared vision for this research is to see CCI as intrinsic to and embedded
in the operations of all research bodies, reflecting genuine sharing of
power, mutual trust and shared belief in its value.”
“We know that involving people with a lived experience in research ensures that research outcomes are responsive and relevant to the needs and preferences of the people and communities it is meant to serve.”
Professor White said the work progressed under the AHRA banner highlights the real value of international and national collaboration in consumer and community involvement. “We have focused on sharing resources and expertise and avoiding duplication in an effort to add meaningful value and enhance the translation of research findings and discoveries into better clinical care.”
Even before the MRFF grant, AHRA had considerable impact on CCI, including conducting Australia’s first national survey of the nature and extent of CCI in health research and creating a formal alliance with Consumers Health Forum of Australia, resulting in a joint position statement and agreed national priorities.
AHRA then went on to publish a practical ‘how to’ handbook, led by WAHTN, to guide health researchers seeking to engage consumers and the community and a foundational report, led by Health Translation SA, summarising the value of CCI in health and medical research. It also undertook an assessment of available tools for measuring the impact of CCI, with recommendations for their use.
Sydney Health Partners Research Director, Associate Professor Angela Todd, led much of this work, and said CCI helps research to address the priorities of consumers and the wider community, rather than just the research community. “Involving consumers and community members in all phases of health and medical research adds value, enhances research design and facilitates the translation of research findings into better clinical care,” she said.
Consumer partner and mother to sons with Cystic Fibrosis (CF), Ms Susan Biggar, further expressed the importance of collaboration and partnership with consumers and the community and values the work AHRA has been undertaking. “Collaborating with patients and families in research is crucial,” said Ms Biggar.
“You need people like me, a mum caring for children with CF, at the beginning, middle and end of your research. We will give you ideas and tell you when your ideas don’t make sense. We bring a perspective, knowledge and a reminder of the reality we face to ensure your research is of most value to everyone involved. AHRA’s work in this area will go a long way to enhancing outcomes for patients,” she said.
Consumer and Community Involvement – National Systems Level Initiative
Maridulu Budyari Gumal (SPHERE) (co-lead)
Monash Partners Academic Health Science Centre (co-lead)
Western Australian Health Translation Network (co-lead)
Health Translation SA
NSW Regional Health Partners
Sydney Health Partners