In our previous blog, The Ethics Quagmire: Case Studies you might have read the case study by Kathy Tannous concerning the difficulties she has faced getting ethics approval from three ethics committees. But are there problems closer to home for researchers, in their own institutions, even when only one HREC is involved? We think so. But the solution may also lie with these institutions, in the better application of existing guidelines. We explain how below.

In Flying Blind 2, we have been highlighting the tortuous route of the researcher’s journey, as they negotiate the ethics processes and the myriad data sources required for their research. In the next few blogs, Australian health and medical researchers who have been through the journey, present real-life case studies and  back-of-the-envelope calculations of what it takes to identify existing data sets and negotiating the ethics processes, to link the data sets to support their research.

“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.