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May 13, 2014

Access to deaths data to benefit researchers and patients

There are always great challenges for medical researchers but additional access to data is now offering a deeper insight into causes of diseases that will hopefully translate to new treatments, faster. A partnership between the Australian Institute of Health and Welfare, BioGrid Australia and the University of Melbourne is set to deepen understanding about patterns of disease and injury, and the effectiveness of treatments and prevention efforts and campaigns. Valuable data held by the Australian Institute of Health and Welfare (AIHW) can now be released to researchers while satisfying privacy, ethical, legal and data security requirements and is advancing medical research. The initiative is providing medical researchers with easier access to valuable data about deaths in Australia, enabling them to understand more about how, when and why Australians die.
 
Underpinning the new approach is a privacy-protecting mechanism for matching data called GRHANITETM that has been developed by the University of Melbourne Rural Health Academic Centre. The system uses advanced encryption and data analysis techniques to allow researchers – with appropriate controls – to link data between sources of information. Researchers are already putting the new system to good use in a study investigating the link between hospital-based and population databases to learn more about the risk of death in people newly diagnosed with epilepsy. The study is the first phase of a larger project planned to investigate the risk and contributors to mortality amongst several specific groups of patients. It involves the University of Melbourne’s Department of Medicine at The Royal Melbourne Hospital and has been led by Dr Tahir Hakami as part of his PhD under the direction of Professor Terence O’Brien.
 
Epilepsy has been identified as one of the top 20 causes of avoidable mortality in Victoria and is one of the five leading causes of death in young adults in Victoria. Up to 10 per cent of the Australian population will experience a seizure and approximately 3 per cent have epilepsy at some time in life, making epilepsy-related mortality a major public health problem. Despite evidence of this serious problem, there is a lack of quality data about the risk of mortality in epilepsy and the factors that contribute to this risk. This means individuals living with epilepsy and treating clinicians do not have the basic information required to address the problem. The initial study has drawn on records of 713 adult patients who attended the Royal Melbourne Hospital’s First Seizure Clinic to address fundamental gaps in knowledge.
 
This dataset was linked through BioGrid with National Death Index records in order to measure mortality after new-onset epilepsy. As a result, researchers were able to identify those patients who had died, and the cause of death. Death rates for the new-onset epilepsy group were then compared to death rates in the Victorian population, using Australian Bureau of Statistics population data for the corresponding time periods and taking into account differences in age and sex distribution. According to collaborator Dr Anne McIntosh from the Melbourne Brain Centre at the Royal Melbourne and Austin Hospitals, one of the fundamental issues is that ‘epilepsy’ is not a single entity. The type and characteristics of the seizure condition varies between individuals, and it is likely that the risk of mortality differs according to these characteristics.
 
Professor Terence O’Brien says the linkages result in high quality data that allow researchers to measure patient outcomes, a crucial first step in the investigation and identification of risk factors.“What we now know is that there is increased mortality amongst a group of individuals who were diagnosed with epilepsy and highlights the importance of investigating mortality in specific patient groups.“This information will inform health care planning to reduce the incidence of mortality after a diagnosis of epilepsy,” he says. “Efficient access to information from the National Death Index has made a major difference to the investigation, and will continue to do so”.
 
Annie Rahilly, Voice, The Age, 12 May 2014
 

 
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