We work closely with four experienced consumer who advise on the needs and interests of patients and carers in NSW. These consumer reps bring extensive personal experience using the NSW health system as patients and carers, particularly in the areas of palliative care, mental health, cancer, heart disease, frailty and aged care. Read more about them and the professional experiences they bring to the Lumos program:
"I am a Health Information Manager with experience in the implementation of clinical classification and casemix systems in several countries. Formerly the Professor of Health Information Management at the University of Sydney, I am also 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. Joining the Lumos Data Governance Committee gives me an opportunity to contribute my experience and learn more about how combining data sets can provide insights into how our health system works."
"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 Dalton, Lumos Consumer Representative
"[In Lumos] the consumer voice is more than a tick box, it's actively sought and listened to as a co-design partner."
"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" Brian Long, Lumos Consumer Representative
"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"
"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."
Read more about the experiences of our consumer representatives.
“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.”
"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
"Lumos is one of the most innovative approaches to influencing better health outcomes for consumers and practitioners I have been involved with."
"As a consumer rep on the Lumos Stakeholder Reference Group (SRG) I advocate for the consumer interests in value-based care pathways that will improve health and wellbeing outcomes due to Lumos. This means promoting the consumer voice/perspective through co-design, including applying best practices for meeting the highest ethical standards in protecting consumer rights, dignity and welfare. In-turn this has benefits for empowering and enabling Lumos to build a social license based on public support, confidence, trust and funding."
"The evidence is growing that timely and relevant consumer participation 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'. So it's fundamental to understand that consumer-centred co-design transcends all care pathways and is optimised through a ladder of engagement (from informing to empowerment) as equal partners in a process from the very early stages."