Shining a light on the patient journey in NSW

The Lumos program is a pioneering program that provides new insights on the patient journey through the NSW health system. In Lumos, de-identified data from general practices is linked with other health service data to provide a more comprehensive view of patient pathways. This can help identify opportunities for improving patient outcomes and experiences. The data asset is continually growing and spans regional, remote and metropolitan areas across NSW.

The Lumos program has been funded by the Commonwealth Government under the Health Innovation Fund. There are many controls to minimize privacy risks and promote transparency and accountability across the program, including approval by the NSW Population and Health Services Ethics Committee. We continually endeavour to implement Lumos equitably and ensure benefits are realised in priority populations such as Aboriginal communities.

Why do we need Lumos?

With the growth and ageing of Australia's population, and rising rates of some chronic conditions, many people require more intensive management of complex health needs and for longer. To meet the needs of our population, the health system needs to change and become efficient in delivering coordinated care across different settings. In order to do this health system stewards need an evidence base to inform reform and policy decisions.

However, accessing health information is complicated in Australia because it is collected in different care settings as well as by private organisations. Therefore 'whole of system' information is not available in one place. Because the data remain separated, the view of the patient journey – the care that patients receive and the outcomes that they experience – is fragmented.

By bringing together 'whole of system' information, Lumos provides a more comprehensive view of the patient journey across the continuum of care, which can help identify the best places and times to intervene or influence health care practices to improve patient outcomes, patient experiences, and the efficiency of health services. Lumos delivers a reliable evidence base that can inform data driven decision making to guide patient-centred healthcare that ultimately benefits patients and the broader community.

Participation continues to grow

Lumos is the largest collaboration the NSW Ministry of Health has ever undertaken with Primary Health Networks (PHNs) and general practices. Following 5 successful pilot linkages, Lumos transitioned to a state-wide program in early 2020 with all 10 NSW PHNs and a rapid growth in practice participation. Over 500 practices are participating in September 2021 and this continues to grow.

Delivering reliable and actionable data to improve patient 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 (but is not limited to): emergency department, public and private hospital admitted patients, non-admitted patients (NAP), ambulance, cancer, and cause of death data. Further data assets are added as needed following ethical approval as the program evolves.

After each linkage, participating general practices and PHNs receive a customised report about patients that visit their practice that they can use to improve care. One participating General Practitioner highlights the benefits of Lumos, stating "any meaningful trackable data helps us improve our care".

The Secure Analytics Primary Health Environment (SAPHE)

The Secure Analytics Primary Health Environment (SAPHE) was launched in December 2020 and allows access to the deidentified data asset for approved PHN, local health district, and Ministry of Health employees. In line with the Lumos ethics protocol, Lumos data is available for approved users for the planning, monitoring, funding and evaluation of health services, and is not currently available for research purposes.

Protecting patient privacy

Privacy and security measures are embedded throughout the Lumos program to minimize risks to patient privacy.

Precautions have been taken to de-identify data before it leaves practices through Privacy Preserving Record Linkage (PPRL) technology, developed by Curtin University. This means that no personal details that identify individual patients, such as names, addresses and dates of birth, leave the practice. Other measures to reduce the risk of re-identification have also been used, including storing the Lumos data in a centralized, secure cloud solution which is closely regulated.

Further information on the data lifecycle can be found on pages 8 and 9 of the Lumos Progress Report - Year 1.

Additionally, an independent privacy impact assessment was performed in 2020 to assess the privacy and security measures in the Lumos program. The review commended the program's privacy safeguards, stating "in our view, the Lumos Program has been well designed to protect patient privacy to a very high degree" (Anna Johnston, Principal of Salinger Privacy and former NSW Deputy Privacy Commissioner, September 2020).

GP spotlight: Dr Charlotte Hespe

Glebe Family Medical Practice was the first practice from Central and Eastern Sydney Primary Health Network (CESPHN) to enrol in Lumos. Dr Charlotte Hespe, GP at this practice and also Chair of the Royal Australian College of General Practitioners (RACGP) NSW & ACT, shares why her practice participates:

"Through reading our report we have a much better understanding of what our patient cohort "looks like" and how this compares both locally (in CESPHN) and within the state. For instance, how many of our patients are socially disadvantaged, how often do they come and see us and how many have chronic diseases – all of this data is given alongside a comparison of the average practice in CESPHN and also in NSW. We are also given information about how many patients do not access services outside of our practice and how many are accessing NSW Health services.

I am really looking forward to our next report as this will show us how we have been doing over COVID."

"Lumos provides us with the most interesting and amazingly detailed reports about our patients and their interaction with local health services."

Dr Charlotte Hespe, participating General Practitioner and RACGP Chair

Further information

If you currently work in a general practice and would like information on participating, please contact your primary health network.

For all other enquiries please contact

Current as at: Thursday 14 December 2023