IJPDS International Journal of Population Data Science

Researchers at the National Centre for Healthy Ageing in Melbourne, Australia, are developing a unique research data platform called the Healthy Ageing Data Platform. It brings together data from routinely collected Electronic Health Records from across various healthcare sectors within a geographic region which is being used to enhance research and improve patient care.

The platform already has a large dataset that gives a comprehensive view of the health journeys of patients as they pass through the health care system, and this has been used to understand the impact of the increased number of people attending hospitals during the COVID-19 pandemic. New insights such as this help in developing new improved models of care.

Electronic Health Record, or EHR, data is a collection of information about a person's medical history, including things like their medical conditions, treatments, and test results. This information is accessed by healthcare providers to help them make informed decisions about a patient's care. But these health records also provide a rich source of data for researchers to better understand health and care needs for people. However, accessing and using this data for research is not without its challenges.
Data generated by different healthcare providers are housed in separate systems that do not easily communicate with each other. The data collected by different people in different healthcare settings can vary widely in quality and is often incomplete. There are also challenges in how these various sources of data can be brought together in a way that maintains patient privacy and confidentiality.

The Healthy Ageing Data Platform has been created to address these challenges. Monash University have been working in partnership with affiliated Health Service (Peninsula Health) to ensure that the data held within the new platform is of high quality in order to support healthcare and clinical research into healthy ageing. Data security is also paramount to the platform’s success. The data is governed by a gold standard, internationally recognised framework called the Five Safes, and researchers can only access anonymised data within a secure digital environment.

Underlying all of this is arguably the most critical component of the Healthy Ageing Data Platform - meaningful engagement with the local population who indirectly supply their data and who are the ultimate beneficiaries of healthcare. The research team set up a community advisory group who contribute their experiences and ideas into how best to convey information about the platform to the general public. The advisory group also provide the research team with any concerns that consumers may have about the use of their data, and they provide advice on how to be transparent about the use of the data.

The potential of routinely collected EHR data to enhance research and improve patient care has already been demonstrated by the establishment of this Healthy Ageing Data Platform.

Professor Nadine Andrew who is the research lead at the National Centre for Healthy Ageing said "The NCHA Healthy Ageing Data Platform provides an exemplar of the efficient use of EHR data for research. Having a defined core dataset will also improve the feasibility of linking to other health, social and environmental datasets to better understand the complexity of ageing and the role that healthcare access and utilisation plays."

 

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Associate Professor Nadine Andrew, National Centre for Healthy Ageing, Monash University

Andrew, N., Beare, R., Ravipati, T., Parker, E., Snowdon, D., Naude, K. and Srikanth, V. (2023) “Developing a linked electronic health record derived data platform to support research into healthy ageing ”, International Journal of Population Data Science, 8(1). doi: 10.23889/ijpds.v8i1.2129.