How connecting data leads to a healthier NSW

Let's face it, access to health information can be complicated.

This is because care is delivered through so many different settings and systems, which we know don't always talk to one another. As a case in point, virtually everyone goes to the GP – yet our health data often leaves this key part of the health system totally out of the picture.

So the System Information and Analytics team at the NSW Ministry of Health embarked on a journey to discover how we can better connect information from GPs with the other pieces in a patient's health journey to get a 'whole of system' view in the one place.

The result has been the Lumos Program, to bridge that gap in a patient's healthcare information by linking de-identified GP data with NSW Health data. It delivers connected data that helps GPs, health service managers and governments to understand what healthcare people need, where and when, and also what works.

The Lumos team have been thrilled with the program's results, which have been borne out of successful collaborations with the Primary Health Networks and doctors who have helped make Lumos a reality.

GPs say Lumos data provides them with a better understanding of what happens to their patients across the healthcare system which helps them to identify the best places and times to intervene in a patient's healthcare process to improve their outcomes. They appreciate that Lumos is not a data system for managing their individual patients but that, for the first time, they have a system-wide view that helps them plan and evaluate the services their patients need for better health outcomes.

These successes at the hands of the Lumos program are more than just words on a screen, hear firsthand from Dr Charlotte Hespe and Dr Jaspreet Saini about how this pioneering program has revolutionised team based patient care in their practices.

The impacts of this program have been felt around the state. Already Lumos has:

• partnered with all 10 Primary Health Networks.
• engaged more than 600 general practices to share data, and this number is growing.
• linked de-identified data for approximately half the population of NSW.
• developed the SAPHE, a secure and centralised data storage and access platform.
• produced multiple reports for individual general practices, Primary Health Networks and NSW Health.
• highlighted meaningful impacts between primary and acute care through unique insights, including patients living with diabetes, hospital readmissions and general practice activity.

You can now see why the Lumos team's pioneering program was a winner at the NSW Health Awards in the category of Health Research and Innovation.

But how does it all work you may be asking? Good question. Lumos extracts and links de-identified GP data with NSW Health data using a technique termed "privacy preserving record linkage". In fact, it's the largest linkage of this kind in Australia. The anonymous data is then analysed to produce general practice and Primary Health Network reports and to generally better understand patient needs and how to deliver services that improve patient outcomes.

The Lumos program provides new data back to participating practices to be used to guide improvements to local services. Some of the participating general practices are currently using Lumos data to:

• improve their triage processes to reduce unnecessary presentations to the emergency department .
• match their opening hours and types of care delivered to the needs of their patients.
• increase testing for the chronic diseases most relevant to their patients.
• improve access to care for patients closer to home.

At a state-wide level, the Lumos data asset can underpin large-scale improvements and refocus the system from high volume care to high value care, for example:

• information developed on rates and times of general practice follow-up after hospital discharge is informing policy on how much medication is provided when patients are discharged from hospital
• exploring patterns in how patients access primary care and other services over time is helping to understand changes that occurred during the COVID-19 pandemic
• understanding the patterns of health service use by patients with mental health diagnoses to inform policies that can improve access to and quality of mental health care.

Data linkages are performed twice per annum in partnership with the Centre for Health Record Linkage (CHeReL), linking data from participating general practices to other services in the health system.

The data asset includes GP data linked to emergency department, public and private hospital, outpatient, ambulance, cancer, cause of death data and others. Further data assets are added as needed following ethical approval as the program evolves.

The Lumos Program team have put all facets of a patient's healthcare journey on literally the same page by providing a view of the patient's care journey in more detail than ever before, all with the goal of bettering the patient's health outcomes.