Why don't we use health data to our advantage?

By Annette Schmiede

Australia collects a lot of health data but we don't use it as best we could.

A recent Federal Government enquiry identified many reasons for this including the delay of governments to make health data available for research, reporting in one instance, a period of six years for the Commonwealth to provide data for a research project.

Sharing health data between the States and the Federal Government is only in its early stages. Concerns around privacy and other legal issues were also cited as contributing factors. What this now means is Australia stands out among developed countries as one where health information is used poorly.

At a recent event I attended at Parliament House in Sydney, a panel of data experts discussed reasons why we need to change our approach to using data in Australia if we are to make better informed decisions of benefit to Australians regarding their health and healthcare.

One of the speakers was Prof Emily Banks who is one of Australia’s most respected and experienced data scientists. She started out as a public health doctor who specialised in epidemiology which is the study of how often diseases occur in groups of people and why. Her most well-known and important work is the Sax Institute’s 45 and Up Study, which collects information on the health of people in NSW who are over 45.

I'm pleased to say I have been part of this study, and gave permission for them to use data collected by both the Commonwealth government and state government about my use of the Australian health system. I also answered an extensive questionnaire about my health history and lifestyle so they could better understand how my lifestyle and health history related to my use of health services. All the information I provided is deidentified, which means anyone using the information does not have access to my name, address or any other detail that links this information to me. My information, along with that of the other quarter of a million study participants, is made available to the research community following very strict protocols around security.

At Bupa we are keen to learn more about the people we insure to better support them in maintaining good health, helping them navigate the health system and alert them when it is time for health screening and vaccinations. A good example is breast screening and pap smears for women and bowel cancer screening for both men and women.

The Bupa Health Foundation is supporting two projects to help overcome this challenge of better understanding the health journey of individuals. The Health Insights Study is a pilot project we are undertaking with The Sax institute, who also undertakes the 45 and Up Study I talked about earlier.

The aim here is to better understand the health and lifestyle of a sample of our Bupa policy holders and if they would allow this information to be then linked with their use of health services, both those funded through Bupa and those funded by government. This information would be deidentified before it was made for research purposes.

The other project is with the University of Melbourne and the Victorian Collaborative Cancer Centre, a grouping of 12 hospitals across Melbourne treating cancer patients. This study has collected information that links primary care and hospital data for many cancer patients in Victoria. The aim is by linking the information across the cancer journey from the time you see your GP, get a diagnosis, treatment and follow up care, there will be learnings that could lead to improved care and outcomes.

As these projects progress we will share more stories of how the bringing together of disconnected data can help improve our understanding of the patient journey to ultimately improve their experience and outcomes.

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