How your data is improving the health of everyone in the community (without you even knowing it)

By Carinna Hockham and Anna Campain

Jump to

Every time you are admitted to hospital, attend a clinic, or collect medication from a pharmacy, new medical data is generated and collected.

This data is described as being “routinely collected data”.

Collecting this data is an essential part of ensuring that health care providers have all the information they need to provide you with the best care and track your progress. Information that might be recorded includes pre-existing conditions, physical measurements such as height and weight, diagnoses, treatment plans, and laboratory results.

It all adds up (anonymously)

In addition to informing decisions about your care, anonymous data generated from your healthcare interactions - and that of other people’s - is combined for administrative purposes. This includes financial decisions by the government around costs and the needs of health services.

When everyone’s data is considered together, it is referred to as “population-level data”.

Researchers use this population-level data to investigate the health of the wider population and how the health system is responding, as well as identify potential solutions.

Just the facts (nothing personal)

Before health data can be used in research, it’s stripped of all details that could identify the original patient, including their name, address, phone number, hospital record number and Medicare number.

This anonymous data can only be accessed by researchers that undergo a rigorous approval process. There are strict laws about how data can – and cannot – be used. Researchers who have been granted access must prove that they are from a research institute, that their project has been approved by an independent ethics committee, and that they can ensure data privacy.

Generating evidence

By looking at the data, researchers can generate evidence regarding how resources should be allocated, guide the development of new treatments and drive improvements in quality of care.

How some people are making a difference

Australians are already helping researchers better understand health and disease in the population.

An example of this impact began fifteen years ago, when over a quarter of a million volunteers in New South Wales, Australia, completed a questionnaire as part of the 45 and Up Study. These volunteers agreed to have their responses linked to their routinely collected health data.

Led by The Sax Institute, it is the largest ongoing study of health and ageing in Australia that uses routinely collected patient data for research.

Since its inception in 2006, data from the 45 and Up Study has been used by more than 750 researchers around Australia on projects looking at a range of conditions from lung cancer to dementia.

Understanding kidney disease and diabetes

The EXamining ouTcomEs in chroNic Disease in the 45 and Up Study, or EXTEND45 for short, is one such project and was set up to investigate the influences, causes and outcomes of chronic diseases in Australia, in particular chronic kidney disease and diabetes.

Researchers from The George Institute used the wealth of information in the 45 and Up Study, combined with routinely collected blood and urine test results, to better understand the impact of chronic disease in the community.

Some of the findings included:

1 in 10 participants were living with diabetes at the start of the study in 2006⁽¹⁾;
almost 6% developed the disease over eight years of follow-up;
people with type 2 diabetes often have more than one related disease;
among the 24,400 people with diabetes, more than 20% developed reduced kidney function when studied for an average of 6 years.⁽²⁾

1 in 10

1 in 10 participants were living with diabetes at the start of the study in 2006 ⁽¹⁾

almost 6% developed the disease over eight years of follow-up

people with type 2 diabetes often have more than one related disease

among the 24,400 people with diabetes, more than 20% developed reduced kidney function when studied for an average of 6 years.

Identifying risk factors through anonymised data

Researchers were also able to identify risk factors linked with developing diabetes such as older age, male sex, Asian ethnicity, lower socioeconomic background, poor physical health (e.g. presence of cardiovascular disease, high blood pressure, obesity or smoking) and a family history of diabetes. ⁽¹⁾

Although not everyone with type 2 diabetes will develop kidney disease, some of these risk factors were also linked to reduced kidney function: older age, cardiovascular disease, high blood pressure and obesity. Also linked to kidney disease were living in a regional or remote area and other health conditions such as cancer and anxiety.⁽²⁾

older age

Asian ethnicity

lower household income

male sex

high blood pressure and obesity

poor physical health

family history of diabetes

living in a regional or remote area