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“How are you going to get the government to implement this, particularly since we are liable to have a change in government in September and it could be back to the beginning, Groundhog Day.” Norman Swan, interviewing members of the McKeon Review Panel in 2013.
In January 2016, National Health and Medical Research Council (NHMRC) CEO Professor Anne Kelso announced a review of the structure of NHMRC’s grant program. The review aimed to determine if restructuring existing programs could optimise the significant public investment (approx. $800 million per annum) disbursed through NHMRC grant programs.
Data is the primary resource - the life blood - that drives evidence-based health and medical (H&M) research. Traditionally, data collected explicitly for a clinical trial, designed to answer specific questions on behavioural or bio-medical questions, served as the primary research data for H&M researchers. This practice started when administrative health data was not readily available in computable electronic format.
Could you tell the triage nurse in the emergency department all the medications your elderly parent is taking? Before you go to Bali this winter, do you know whether you’ve ever been vaccinated against hepatitis A? And what was the name of that antibiotic you were allergic to years back?
All this information exists, most likely in the files of a GP or specialist, or a hospital you went to for treatment a couple of years ago. It is probably even stored electronically, but can you get it when you need it?
We’ve already had a look at the vast array of different problems associated with attempting to track Australian health and medical research (HMR) spending. We’ve also explored the hoops that researchers have to jump through when they apply for grants or seek to gain approval from ethics committees, not to mention when they make requests for access or linkage from custodians and data gatekeepers.
Health matters to Australians. Health and medical research (HMR) does too. In 2016, Research Australia polled public opinion on national priorities. Eighty eight percent of respondents highlighted improving hospitals and the health system. Seventy nine percent of respondents favoured increased HMR funding.
An earlier post highlighted several of the difficulties that Australian researchers face. One of the most prominent of these is related to accessing health and medical research (HMR) data.
Released in February 2013, the McKeon Review marked the most comprehensive analysis of the health and medical research (HMR) sector since the Wills Review in 1998. McKeon’s words highlight one of the panel’s most alarming takeaways. At the end of the review period, despite the “combined insights of thousands of individuals who contributed their ideas and time”, meeting with “over 300 individuals from universities, MRIs, governments, hospitals, businesses and not-for-profit organisations” and receiving 400 written submissions, the panel were not able to make a confident assessment of total HMR spending.
One would think that the process of obtaining data to conduct health and medical research in Australia would be straightforward. Unfortunately, it’s not. Researchers are constantly plagued by incessant delays and lengthy negotiations – all which stem from the fact that they have to go through a variety of different processes before their projects can commence.
Talk to most Australian health and medical researchers and they’ll tell you that data is vitally important to their work. Data can help us track population health trends and further our understanding of disease causation.
