Lumos is a healthcare data program that combines patient information from different healthcare services to understand how patients use the health system in NSW.
It is important to know that personal information like names, addresses and birth dates from patient data at a participating general practice are removed before they leave the general practice and are never entered into Lumos. These ‘de-identified’ patient data are then combined with other health service data, like hospital records. This means we can see a patient's journey, but we can't identify who the patient is. We call this combined information the Lumos Data Asset.
For more information de-identified data, see Information and Privacy Commission of NSW Fact Sheet on de-identification of person information.
The Lumos Data Asset help us understand how patients move between different healthcare services. With this information, we can find ways to improve patient care and make sure patients get the right services at the right time and place.
The Lumos program connects patient data from general practices (with identifiable information removed) with data from public hospitals, emergency departments, ambulance, cancer services, causes of death, outpatient services, and others. These data include health information like diagnoses, medications, and tests. See What current data collections are available in Lumos? for more detailed information.
Lumos does not collect or use information that could identify patients, like names, addresses, or birth dates, phone numbers, driver’s license details, Medicare numbers, insurance details, or financial information.
Every piece of data used in Lumos has been approved for inclusion by the NSW Population and Health Services Research Ethics Committee who are certified to perform independent ethics reviews.
Lumos data currently includes patient records from the following datasets*:
*This list is subject to change.
General practices who provide patient data to Lumos have agreed to participate in this program. These practices have worked with their local Primary Health Network to understand the benefits of Lumos and the security measures in place to protect patient data. They support sharing their patients’ data (with names, addresses and dates of birth removed) to help improve the health system.
When you go to a general practice for the first time, you will sign a consent form for a healthcare professional to provide you with medical treatment and care. The consent form also includes whether you agree to have your data used for secondary purposes. Sharing data with Lumos to improve the health system is an example of a secondary purpose.
Lumos has what is called an ethical waiver of individual consent granted under guidelines for the Management of Health Services. This means that patients do not have to give individual consent to participate in Lumos specifically because the general practice has provided consent to share their patients’ data for the management of health services. The conditions of the ethics approval are strictly governed by the Lumos Data Governance Committee
This means that if you go to a general practice that participates in Lumos and you gave consent for secondary use of your data when you enrolled, your health records from that practice are included and are already helping to improve the services you and other patients receive.
Lumos collects patient data from participating general practices every six months. The newly collected data replaces all existing data in the Lumos Data Asset. This means that any general practices who no longer want to participate will no longer have their data included in the Lumos Data Asset, and all previously included data will be removed. General practices can stop participating in Lumos at any time.
If you have any questions about your enrolment and consent, please talk to the reception staff at your general practice.
Precautions have been taken to remove any identifiable information before patient data leaves general practices using a technology called Privacy Preserving Record Linkage (PPRL), developed by Curtin University. We also never collect any information that has been typed into a record manually – just in case names are accidentally included.
Additional measures to protect patient privacy include storing the Lumos data in a centralised, highly secure NSW Health storage location that is heavily regulated, with strict protocols for accessing Lumos data. The Lumos Data Asset is currently stored in the Secure Analytics Primary Health Environment (SAPHE).
Independent privacy experts have assessed the program and found that “the Lumos Program has been well designed to protect patient privacy to a very high degree” (Anna Johnston, Former NSW Deputy Privacy Commissioner, September 2020 – view the Lumos Privacy Impact Assessment for more information).
Before any patient data leaves a participating general practice, Lumos uses technology called Privacy Preserving Record Linkage (PPRL) to replace information that may identify patients with codes. This means any information that could identify a person, like their name, date of birth and address, is irreversibly turned into an anonymous code before it and the rest of the patient health data are uploaded to Lumos.
At the same time, PPRL technology is also used on health data collections from NSW Health. The anonymous codes are then matched together, allowing GP and hospital data collections to be linked, creating the Lumos Data Asset.
The PPRL technology used by Lumos links data based on likeliness and has about a 95% accuracy rate. This provides a reliable snapshot of how the NSW population uses health services. However, because there is a potential for 5% difference, Lumos is only used for planning and analysing health services, and is never used for clinical decision-making.
Individuals are not identified in the Lumos data asset at any stage of the linkage process.
The Lumos program operates under ethical approval which means that an independent group with expert skills has assessed the potential risks, benefits and integrity of the program. Any major changes to the program must be reviewed and approved by the ethics committee before the changes can be made.
Further information is available on NSW Population & Health Services Research Ethics Committee.
The Lumos program has been heavily and independently assessed to ensure that it meets the highest standards of data security and confidentiality, and to ensure that the risks and likelihood of data breaches and hacks are minimal. A data breach protocol has been developed with the Lumos Data Governance Committee, which has representation from a range of different organisations and consumer representatives.
In the unlikely event of a breach, this protocol will be followed as soon as the breach is identified. The protocol includes notifying the appropriate health care entity within 24 hours, investigating the breach and assessing the risk, and responding appropriately. Any data breach and the response will also be reviewed by the Lumos Data Governance Committee.
The data held in Lumos does not pose a risk of identity theft as it does not include any directly identifiable details (‘identifiers’) or codes that can be used to access direct identifiers. For instance, as well as not including patient names, Lumos does not hold phone numbers, driver’s license details, Medicare numbers, insurance details, financial information or any other details that could be used to steal and misuse an individual’s identity credentials. This significantly reduces possibility of misuse.
See more about how your data is safely stored at How secure is my personal information? and How can data be linked if it is de-identified?
General practices that participate in Lumos get information that is unique to their services. Doctors and other healthcare professionals can get a better understanding of their patients, provide more targeted care to their patients, and improve services to better meet the needs of their patients.
Some improvements that benefit patients at the practice include:
Other health care services are developed and supported with help from Lumos data, such as Urgent Care Services which provide in-person and virtual treatment and advice for people with urgent health issues.
Please visit Lumos in Action for more information on how Lumos data are benefiting communities.
Participating general practices receive information from Lumos every 6 months that they can use to inform the services they provide. We regularly receive feedback from doctors that this information is unique and invaluable in supporting them to provide the best possible care to their patients.
Some feedback that has been received from doctors about Lumos include:
“[The report] gives us perspective on our patients who are ending up in hospital. We use it to develop our internal quality improvement projects.” “We look closely at our results, especially the hospital visits and we aim to reduce them by concentrating on the different areas reflected - it gives us goals e.g. reducing COPD (Chronic Obstructive Pulmonary Disease) presentations by 25% before the next report is published”.
“[The report] gives us perspective on our patients who are ending up in hospital. We use it to develop our internal quality improvement projects.”
“We look closely at our results, especially the hospital visits and we aim to reduce them by concentrating on the different areas reflected - it gives us goals e.g. reducing COPD (Chronic Obstructive Pulmonary Disease) presentations by 25% before the next report is published”.
More feedback from participating doctors can be found in the appendix of evaluation reports, available on Lumos publications.
Access to Lumos data is limited and heavily regulated by the Lumos Data Governance Committee. A small number of statistical analysts and subject matter experts from NSW Health and NSW Primary Health Networks can access the data for the specific purpose of improving healthcare in areas such as service planning, policy, and clinical protocols.
Data access by external parties (that is, by people who are not employees of NSW Health or NSW Primary Health Networks) is strictly governed and requires partnership with either NSW Health or a NSW Primary Health Network to ensure the data are used to drive system improvements.
To ensure patient privacy, general practices are not able to directly access the Lumos Data Asset.
Find out more about Accessing Lumos data.
For more information about Lumos, please send your queries to lumos@health.nsw.gov.au.
For more information about Primary Health Networks, please visit Australian Government Department of Health and Aged Care - New South Wales Primary Health Networks.
