Case story

Talking up the research: forum and follow-on consultation

Indigenous researcher James Ward, Program Manager at the National Centre in HIV Epidemiology and Clinical Research at the University of New South Wales, explains how researchers talked up a large multi-site project. A long consultation and planning phase proved successful, with more communities asking to be included.

A real trick for researchers is how [to] engage with the amount of health services that we wanted to engage with [particularly in remote areas], without having any funding… We’d submitted once, it didn’t get up and the main critique from the NHMRC was ‘not enough community engagement’. The way we did it the first time was to say, we've spoken to the Department in the NT and the Aboriginal Medical Services Alliance Northern Territory… and sought their in-principle endorsement. But really it isn’t enough…. You've got to have engagement with communities before applying for a grant. I think that's number one, it can't be a totally researcher-driven agenda, it has to have the perspectives of the health services and communities within your research project.

For the [second] application, we said the only way we're going to get engagement was to bring everyone together. So we held a community forum for two days in Alice Springs to get their perspectives on this study before the grant application went in. Fifty-five people from community-controlled and government health services came, and they were the right people – we really targeted the audience. We got clinic managers, CEOs where possible and board members. We set about to explain why we were applying for this funding. We talked about the rationale, the processes, how it would work for communities, how it might fit in with their current practice, and [we broke] down the stigma associated with research and a randomised trial. People got to know who we were.

After the forum we gave a feedback report to all the participants. Sure enough, the grant got up. From then on we have kept them in the loop. After we got the grant, we applied to Ethics Committees for one year of consultation with communities…

Initially we said we'd have 21 communities, but Queensland and WA asked to come into the trial. So we extended our consultation and what's happened now is that over 60 communities have signed on. And I think that's really down to this consultation and planning phase. It's almost two years of consultation since we got the grant and soon we will start our intervention. If you add on the year before that, when we got knocked back, it's three years of consultation. We will run our intervention for the next three years.