Every time you use the healthcare system, a new record is made. There are records for when you are admitted to hospital or an emergency department; records documenting your routine health screenings; and records for when you are born and when you die.
Each record marks a personal event on the road map of your life.
After being scrubbed of identifying information to ensure confidentiality and anonymity, these records can be used by health researchers and policy-makers to better understand how patients move through public and private hospitals across NSW.
By finding patterns in the diseases we have and the ways we use our local health services, researchers can tease apart how things like location, socio-economic status, and behavioural risk factors can influence medical outcomes. They can also provide insights into the quality of healthcare we receive.
It’s this power of data, and the way it can be used in an efficient, cost-effective manner to solve health problems and identify emerging medical concerns, that drives Associate Professor Sarah Thackway, Executive Director of the Centre for Epidemiology and Evidence at the NSW Ministry of Health.
According to Thackway, the state of NSW undertakes complex analytics to better understand the health of the population in the state. It releases roughly 900 million anonymised records per year to researchers who use them to make new discoveries and develop deeper insights for public benefit.
Real-world evidence
NSW’s Centre for Health Record Linkage (CHeReL) houses some 164 million records from 14.2 million people in NSW and the ACT, linking records from 25 related datasets.
Record linkage centres like the CHeReL and the national Population Health Research Network equip researchers with what’s known as ‘whole-of-population data’, which can reveal insights that are almost impossible to access through routine studies or clinical trials.
New medical treatments are rigorously tested using randomised clinical trials, but in order to produce high-quality evidence for specific conditions, people who have additional health conditions are generally excluded from participating.
This of course limits what researchers can learn about these treatments in a controlled setting, says Foundation Director of the Centre for Big Data Research in Health at UNSW, Professor Louisa Jorm.
If the trial is successful and the treatment is registered for use, “it goes out into the real world, and is used in people who are not at all like the people who were in the trial”, she explains.
Pregnant women, for example, are usually excluded from trials on ethical grounds. Yet with the increasing prevalence of chronic diseases such as type 2 diabetes and hypertension, the reality is that many women with these conditions will require treatment during their pregnancies.
The real-world evidence gained from linking Pharmaceutical Benefit Scheme (PBS) data with the state’s Perinatal Data Collection – which monitors trends in pregnancy care, services, and outcomes – has allowed researchers to identify the effects of different types of medications on pregnant women.
So far, the research has found little evidence of adverse outcomes.
“It’s one of those things that we need really large and whole-of-population data to look at, because many of the outcomes are quite rare,” says Jorm.
Ensuring equity for all
Analysis of whole-of-population data allows NSW Health to ensure the delivery of its population health programs to those who need it, in an effort to prevent chronic diseases such as type 2 diabetes.
“Disadvantage is the main cause of preventable health issues,” says Thackway.
“We can look at particular geographical areas of need, where there are socio-economic disparities, and make sure our programs are targeted to those communities. Our programs aim for better health and wellbeing for all, and to achieve the full health potential for our communities.”
An example of this is the NSW Centre for Population Health (CPH) using PBS prescribing data to monitor the success of its hepatitis c strategy.
In March 2016, new and more effective antiviral medications for hepatitis c became available under the PBS. These new treatments are highly effective, with a cure rate of 95%, says the CPH’s Executive Director, Dr Jo Mitchell.
High levels of treatment and cure will mean that fewer people in the population are infected with hepatitis c, leading to significant reductions in the transmission of the virus to others.
The anonymous PBS data is used by the CPH to track how many people are accessing hepatitis c treatment in each local health district, so they can focus their efforts on people who are living with the disease and link them to treatment services.
The strategy aims to treat 90% of people with hepatitis c in NSW.
“We’ve treated about 26% of people statewide so far,” says Mitchell. “We use these data to help ensure that focus, and that we put everything in place to meet our goal of virtual elimination by 2028.”
From personalising treatment for infectious and chronic disease to informing the delivery of more effective preventative health policy, our ability to link and mine whole-of-population data will improve healthcare for everyone well into the future.
By Viki Cramer
