As research teams across the country mobilise to undertake critical research for COVID-19 we want the community voice to remain front and centre in how these projects are being designed, developed and disseminated.
In response, Ms McKenzie and her team at Telethon Kids Institute have established a national Community Advisory Group (the Group) to provide input into the rapid research being developed for COVID-19. There has been enthusiastic acceptance of invitations from community members across the country to join the Group and have received positive feedback from consumer organisations in the UK and Canada, who are all still working on ways to engage their own communities in rapid research.
The twenty-member Group of senior experienced consumer and community advocates has members from WA, NT, Vic, NSW, Tas and Qld with extensive networks and links with Consumers Health Forum, the Department of Health’s HTA Consumer Consultative Committee, non-government organisations, patient support groups and Aboriginal community groups. Members range in age from 22 – 70+ years of age and bring knowledge and lived experience of a variety of health conditions including heart disease, lung disease, cystic fibrosis, cancer, mental health and disability.
The Group has met virtually and via email to provide input into a range of clinical, laboratory and epidemiological research projects at Telethon Kids and collaborators at the University of Sydney, the Queensland University of Technology, the Doherty Institute and Monash University. Group members are been extremely willing to contribute to this major public health crisis and have provided input into grant applications, writing plain language summaries, ongoing advice and support including accessing ‘hard to reach’ groups.