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

By Carinna Hockham and Anna Campain
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CHEMIST HOSPITAL GENERAL PRACTICE

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.

This data is protected

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.

Answering big questions
Communicating big answers

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)

6%

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

Reaching blood sugar targets and improving quality of care

Blood sugar control is a major focus of diabetes care. Through EXTEND45, the research team was able to assess the proportion of people with diabetes reaching the recommended blood sugar targets. We were also able to measure how long it took, on average, for treatment to be intensified when those targets weren’t being met.

It took around 45 days, on average, for patients to have their treatment intensified. Already being on multiple medications, having a break in treatment and lower engagement with the healthcare system all extended the time it took for patients to receive timely care.(3)

These kinds of important insights drawn from anonymous population-level data can help health providers know what to look out for and plan the best care for their patients. It can also help policy makers make better decisions around healthcare funding, which can have enormous impact on all Australians.

Towards better health for everyone

Being able to use large amounts of anonymised data in health research has drastically changed how it is done, making it more efficient and broadening the questions that can be investigated.

In the past, answers to these types of questions would have taken many years and demanded much more time from the volunteers taking part in the research. Now, using the data collected as part of routine care, researchers can explore the same questions (and more!), all while maintaining the privacy of individuals.

Importantly, medical information used to learn more about the health of the population is always anonymous. Using this data helps researchers find the clues to target the right care to the right people at the right time.

Insights from your anonymous data are improving the lives of everyone in the community

Developed by

Dr Carinna HockhamDr Carinna Hockham

Dr Carinna Hockham is a postdoctoral Research Associate in the Global Women’s Health Program at The George Institute for Global Health, Imperial College London.

Dr Anna CampainDr Anna Campain

Dr Anna Campain is a biostatistician at The George Institute for Global Health with experience in health, medical and bioinformatics research.

Maarinke van der MeulenMaarinke van der Meulen

Maarinke van der Meulen is the Thought Leadership Program Manager at The George Institute for Global Health, and loves to amplify insights in new ways.

With thanks to Anastasia Alden, Dijlah Moungatonga, Eddy McCall, Louisa Sukkar, Meg Jardine, Tina Wall, and the members of the Kidney Consumer Panel for their input, clarity and creativity.

We thank the many thousands of people participating in the 45 and Up Study.

This research was completed using data collected through the 45 and Up Study (www.saxinstitute.org.au). The 45 and Up Study is managed by the Sax Institute in collaboration with major partner Cancer Council NSW; and partners: the Heart Foundation; NSW Ministry of Health; NSW Department of Communities and Justice; and Australian Red Cross Lifeblood.

We also thank the various data custodians who provided data to the study:

Services AustraliaNSW Ministry of HealthANZDATA RegistryLaboratory service providersAnd NSW Center for Health Record Linkage (CHeReL) for performing the data linkage

Data were securely accessed using the Secure Unified Research Environment (SURE)

EXTEND45 received funding from:

A NSW Cardiovascular Research Network Research Development Project Grant from the National Heart Foundation of Australia awarded to Prof Meg JardineRebecca L Cooper FoundationRoche Products Pty Ltd.Eli LillyMerck Sharp & Dohme (Australia) Pty LtdAmgen (Australia) Pty Ltd

None of the funding bodies were involved in the design of the study and did not have access to the data.

Study governance:

EXTEND45 was set up by Prof Meg Jardine in 2013 and coordinated through The George Institute for Global Health, Sydney. Scientific oversight of the study is provided by an independent steering committee - the details for which can be found here. Ethical approval for the EXTEND45 Study was obtained from NSW Population and Health Service Research Ethics Committee (HREC/13/CIPHS/69).

References

[1]H. Zhang et al., “Prevalence, incidence and risk factors of diabetes in Australian adults aged ≥45 years: A cohort study using linked routinely collected data,” J. Clin. Transl. Endocrinol., vol. 22, p. 100240, Dec. 2020, doi: 10.1016/j.jcte.2020.100240.
[2]Y. Xie et al., “Therapy Escalation Following an Elevated HbA1c in Adults Aged 45 Years and Older Living With Diabetes in Australia: A Real-World Observational Analysis,” Diabetes Care, vol. 43, no. 11, pp. e185–e187, Nov. 2020, doi: 10.2337/dc20-0269.
[3]L. Sukkar et al., “Incidence and Associations of Chronic Kidney Disease in Community Participants With Diabetes: A 5-Year Prospective Analysis of the EXTEND45 Study,” Diabetes Care, vol. 43, no. 5, pp. 982–990, May 2020, doi: 10.2337/dc19-1803.