Working closely with consumers and our community

"Lumos is one of the most innovative approaches to influencing better health outcomes for consumers and practitioners I have been involved with."

​Brian Long, Lumos Consumer Representative

We work closely with four experienced health consumers who advise on the needs and interests of patients and carers in NSW. These consumer representatives bring extensive professional and personal experiences using the health system in NSW as patients and carers, particularly in the areas of palliative care, mental health, cancer, heart disease, frailty and aged care.  Our consumer representatives are integral members of established Lumos Committees, the Data Governance Committee and Stakeholder Reference Group.

Our Stakeholder Reference Group also has representation from Health Consumers NSW.

Read more about them and the professional experiences they bring to the Lumos program below.

Beth Reid

"Formerly the Professor of Health Information Management at the University of Sydney, my recent consulting and research work has focused on improving the quality of hospital discharge data, especially the coded clinical data, and how these data are used to improve the quality of care.  

I am a community representative on the Forster Health Committee, and the Clinical Quality and Patient Care Committee for the Mid North Coast Sector, Hunter New England Local Health District. This committee work gives me an opportunity to contribute a consumer perspective as well as play a part in the work of the committees more generally. On the Lumos Data Governance Committee I enjoy learning more about how combining data sets can improve patient care."

Brian Dalton

"I have diverse For Profit, Not-for-Profit and Health system experience in championing consumer voice/engagement in program planning, design, delivery, monitoring and evaluation. As a health consumer who benefits from the NSW Health system, I'm motivated by a feeling of social responsibility to make a direct contribution by supporting ground-breaking data linkage programs such as Lumos that are meeting consumer needs for advancing health and wellbeing to improve health outcomes. [In Lumos] the consumer voice is more than a tick box, it's actively sought and listened to as a co-design partner."

Brian Long

"I've had a long career in Local Government, largely as a Senior Manager and Policy Advisor in public health and the environment. I am now actively engaged as a consumer representative with the Agency of Clinical Innovation (ACI) and South Western Sydney Local Health District, mainly in palliative care. The Lumos Project will allow me to pursue my goal of ensuring that people in NSW have equitable access to quality health care across a range of settings that best meets the needs of patients, families, and carers. As a consumer rep, I draw on my family’s and my own experiences as consumers of health services combined with my professional experience to advocate for consumers across NSW."

Georgina Luscombe

"I bring extensive consumer representation experience from rural roles including the Western NSW Primary Health Network (WNSWPHN) Community Advisory Council, University of Newcastle Centre for Rural and Remote Mental Health Community Advisory Committee, and the NSW Telehealth Strategic Advisory Group. Professionally, I am currently an Associate Professor in the School of Rural Health, University of Sydney, with expertise in quantitative medical research."

Consumer spotlights

As the Lumos program evolves to meet the health system's evolving needs, Lumos recognises the need to continue to expand consumer engagement, raise social awareness and ensure that varied consumer voices are heard and involved. Lumos engages with consumers broadly, across NSW Health, including the local health districts and specialty health networks and pillar agencies, through our Primary Health Networks, and industry bodies such as Health Consumers NSW.

Read more about the personal experiences of our consumer representatives.

Lived experience story:  Brian Long

“I became a consumer representative because I was the significant carer for my mother for 5 years. It became clear that consumers and carers can feel overwhelmed by the system and that this was not appropriate. I felt I owed it to her to ensure that her experience, which was good, could be improved to outstanding for others.

In Lumos, the data previously inaccessible ensures that change is affected at the local, district and State level. The Stakeholder Reference Group operates as other State level committees I have participated, where consumer input is actively sought and well appreciated. I feel my contribution is highly valued by other members of the Reference Group."

Lived experience story:  Brian Dalton

"The evidence is growing that timely and relevant consumer participation, as equal partners, results in services which are better designed to meet consumer needs and lead to better health outcomes. Not involving consumers is like 'throwing a birthday party and not inviting the person whose birthday it is'.

As a consumer rep on the Lumos Stakeholder Reference Group, I advocate for the consumer interests in care pathways that will improve health and wellbeing outcomes due to Lumos' decision support information. This means promoting the consumer voice or perspective through co-design, including applying ethical standards in protecting consumer rights, dignity and welfare. In-turn, this has benefits for empowering and enabling Lumos to build a robust social licence based on public support, confidence and trust."