Community consultation is a growth field increasingly utilised by many in the commercial world, from property developers to those constructing roads.
Community consultation is a growth field increasingly utilised by many in the commercial world, from property developers to those constructing roads.
But while buildings and roads are sensitive matters, health is much higher on the agenda of public concern – especially in the fields of medical research and the confidentiality of records such as an individual’s DNA sample.
So it was with some trepidation that the Western Australian Institute for Medical Research scientists behind the proposed Joondalup Family Health Study embarked on what they now believe is the biggest community ‘outreach’ program ever undertaken for such a project.
The health study team wants to examine big numbers of Joondalup residents, taking thousands of readings as well as DNA samples, as a precursor to a wider study embracing the whole of Western Australia.
However, they were concerned that the value of the project to medicine, the state and, ultimately, the individuals involved, could go unrecognised if the community harboured suspicions about the way the data would be used.
But following an information program, including a day-long community workshop and information through letter drops and schools, and more than 1,200 responses from 7,500 mailed survey forms, the researchers have found the opposite of their fears. Results have shown residents not only overwhelmingly support the study, but are lining up to take part.
The group, led by University of Western Australia Professor Lyle Palmer and his team leaders, Meina Lee and Lara McDonald, have been so encouraged by the results they have decided to fast-track their plans and expand their proposed study.
Originally the proposal was for a study of between 16,000 and 50,000 to 80,000 Joondalup residents for the $10 million, three-year first stage of the project.
“What has come strongly across is the public really want access to more research and more technology,” Professor Palmer said.
“They are aware of the fantastic advances in medical research and they want them.”
Professor Palmer supports this argument with statistics from the survey, such as 85 per cent of respondents indicating they were interested in participating. Similar numbers said they would allow their children to participate.
Importantly, he said, the other 15 per cent were unsure, but did not reject the concept outright.
Interestingly, 77 per cent of respondents preferred their personal data to be the responsibility of the medical community and researchers rather than government, while there was sizeable minority that felt genetic information had to be better protected than general medical records.
Furthermore, a separate study of general practitioners across the state also showed strong support.
Perhaps it is not surprising that Joondalup residents favour such a study, given that residents of areas where other studies have taken place actually end up healthier than elsewhere – for reasons that are not fully known.
Professor Palmer said the survey results were simply the latest in a series of very good news for the health study proposal, which he hoped to have past the pilot stage within 12 months.
New federal government privacy laws that made Australia a leader in data protection, the amount of state-of-the-art equipment and complementary research capacity at Joondalup-based Edith Cowan University, and the latest pronouncements of support for medical research by premier Alan Carpenter have all been good news for the health study.
Professor Palmer is adamant that the health study will bring distinct benefits for business.
Apart from potentially lowering the cost of health paid by taxpayers by providing better information with which to target resources (the key justification for the health study), he believes the spin-offs could be significant as the study acts as a catalyst for a new WA industry.
Firstly, the study will attract leading minds and research teams to the state to use the data. Secondly, such follow-on research is likely to result in commercialisation opportunities.
This is a natural result of what is already occurring here through the work of pioneers including Dr Kevin Cullen in Busselton and WA’s two recent Australians of the year, Professor Fiona Stanley and Dr Fiona Woods.
“Medical research in WA is winning awards,” Professor Palmer said. “People are realising that while we are really, really good at mining we are also really, really good at medical research.”
