Prof Paul Pavli
Clinicians with an interest in IBD are invited to provide input into a rigorous process to identify the Top 10 research priorities for people with IBD, their carers and healthcare professionals.
Professor Paul Pavli, a director of Crohn’s and Colitis Australia (CCA) told the limbic that an initial survey of consumers and health professionals had identified more than 800 potential research questions.
A steering committee has since shortlisted 50 of the most important research questions which appear in the current survey.
The survey is open to IBD patients over 16 years, their carers or family members and healthcare professionals with experience caring for people with IBD.
Professor Pavli said there was now a lot more awareness of the need for consumer-driven research.
“People are much more aware of the need to view things from the patient’s perspective. Researchers have their own ideas and their own interests but at the end of the day medical research is all about improving the lives of people who suffer from these various conditions.”
“For example, every patient I know will ask me about the role of diet in the development of IBD…that is one of the most important priorities for patients and their families.”
He said researchers however typically don’t have a lot of interest in diet, for various reasons including the difficulty of controlling for diet.
“That is a clear area … where the interests of the gastroenterologist are not commensurate with the interests of the patient.”
Professor Pavli said CCA had been very active in establishing IBD standards, undertaking a national quality of care audit, and developing a National IBD Action Plan.
While increased investment in research was identified as a priority in the National IBD Action Plan, it didn’t specify particular areas of research.
“And that’s why the next step is to identify those areas together with the James Lind Alliance from the UK.”
Professor Pavli said the pay-off will come in more competitive applications for research funding from organisations such as the NHMRC or MRFF.
He said the MRFF had recently released its Draft Australian Medical Research and Innovation Priorities which clearly identifies their new focus on consumer-driven research.
“We could go and say this proposal has been identified as a priority area by CCA… it builds up your argument and hopes of obtaining funding.”
He said a workshop to finalise the Top 10 research priorities will be held after the survey closes on 12 December.