Have you ever thought about what the health system could look like in 2031? What roles could consumers play to make the system work better for everyone? These are challenging questions with no simple answers!
As researchers who study systems and services and how they are delivered, we grapple with these questions every day, and our work is enhanced by conducting research in partnership with consumers. For example, this and this research that we conducted in partnership with CHF revealed that half of consumers reported that ‘there are some good things in the Australian health‐care system, but fundamental changes are needed’, and that consumers found it difficult to navigate the health system, especially those who were younger or lived with chronic conditions.
Health consumers are always ready to respond to challenging questions. During a 90-minute discussion session at the CHF Shifting Gears Summit in March 2021, we identified common threads around how the health system could change by 2031 and the roles that consumers should play.
Communication, navigation and culture
Our panel felt that the culture of “do as I say” is entrenched in the system. Consumers are told what to do to improve their health and which health services to use. They feel that care should be delivered collaboratively to ensure that they have the chance to express their needs. The power imbalance between consumers and health professionals was raised frequently in the discussion. One way to address this is to give consumers access to their medical records. As one member of our panel put it: “I don’t know what’s in that file. It’s got my name on it and lots of information about me, but I’m not allowed to look at it. How can I have an informed conversation when they have all the information and I have nothing?”
Although health professionals are taught about communication with consumers during their training, the health system leaves little room to put this training into practice – there simply isn’t time during a routine consultation to cover more than the presenting health issue. A systems change is needed so that health professionals are rewarded for the time that they spend listening. Moving some responsibilities from doctors to nurses or care navigators was highlighted as a potential solution.
Communication is needed among different healthcare professionals involved in caring for the same patient to avoid duplicated care e.g., the same tests and examinations are repeated by different professionals. This could be done through shared care plans and electronic medical records. Although consumers recognised the potential of myHealthRecord, they felt that it was underutilised by health providers and consumers, and that the functionality needed to improve.
Authentic consumer involvement
Consumers are often experts in their own condition, and this should be recognised by healthcare professionals. Consumer involvement is necessary at all levels of care, from where research is conducted to the design and delivery of care. Resources that show consumers how to engage at different levels of the health system and in medical research have been identified under the Australian Commission on Safety and Quality in Healthcare Framework on consumer engagement. This should act as a principal policy to support such activities. We recently delivered a Masterclass on Implementation Science for Consumers and are helping the CHF to develop a Consumer Academy to upskill consumers in that area.
But is this consumer involvement realistic? The young person on our panel felt that it was far-fetched to think that young people, especially those with CALD backgrounds would know how to become involved in the design of research, when “Young people from migrant communities are not aware of how the health system works.” There needs to be a constructive dialogue with youth, and integration of health services into educational institutions so that young people become aware of services and how to access them.
Don’t forget the carers’ role!
The panel discussed the need to acknowledge the enormous contribution of carers in our health system. It’s an extremely challenging role and carers need support so they can continue providing their important contribution that often goes under-recognised in the health system. But there is a distinct lack of social services to help the carers of people with disabilities, rare, complex, chronic or terminal conditions.
It’s different in the country!
In rural and regional areas people are deeply concerned that there isn’t easy access to hospitals or ambulance services. Often hospitals with emergency departments are over an hour away and there is no ambulance service in the area. Unfortunately, there is a lowered expectation of receiving care. “There is absolutely no access to immediate care for the entire weekend”. However, teamwork tends to be better in rural regions – health professionals band together more to work with their communities. Our rural-based panel member felt that there was a push to develop social prescribing systems for isolated people or those with mental health issues or chronic conditions. Such systems allow consumers to access beneficial non-medical services such as walking groups, gardening clubs or book clubs. Prescribing social activities and linking people with social services has been shown to improve health and is important across the board, not only in rural areas.
What do we need to do now?
Of course, we knew that there would be no shortage of great ideas from health consumers and 90 minutes was always going to be too short! But what should we do right now and how?
“The most powerful thing that consumers can do is to unify and have a clear picture of what needs to change so that they can work effectively together with the system. If all consumers are coming from their own perspective and are banging their own drum, then the system gets overwhelmed, and no positive change can occur.
Empower people to enter into conversations and shared decision-making about their own healthcare by giving them access to their own medical histories, health records and information.
We have the Australian charter of healthcare rights, but a lot of people don’t even know that it exists. Well, let’s start right now! Here is a link to the charter. Please read it, talk to your friends and health care providers about it.“
As researchers concerned about the sustainability of the health system, we certainly learned a lot! We are open to having ongoing conversations and we acknowledge the amazing leadership of Leanne Wells and her team at the CHF to keep up the unified advocacy for health consumers across Australia
If you missed out on the Shifting Gears Summit and our discussion you can access a recording here.
With thanks and gratitude to our incredible panel of consumers:
Linda Beaver, Personal experience of rural health services as a health professional and as a health consumer
Megan Donnell, CEO of Childhood Dementia Initiative. Personal experience of rare complex disease and driving research and advocacy.
Jane McGlashan, Consumer representative of the Western and Central Melbourne Integrated Cancer Service.
Jahin Tanvir, Commissioner at Wellbeing Health and Youth and Centre of Research Excellence in Adolescent Health
Ajay Varshney, Consumer Representative on committees at Westmead Hospital and Prince of Wales Hospital in Sydney.
About the author
Yvonne Zurynski is Associate Professor, Health Systems Sustainability, leading the activities of the central coordinating unit of the NHMRC Partnership Centre for Health Systems Sustainability, at the Australian Institute of Health Innovation. She has broad experience and expertise in research and education across health sectors and disciplines having conducted research in settings ranging from primary care to intensive care. Her focus is on conducting research that makes a difference in the real world – for example, her research has supported the development of clinical guidelines, the co-design and implementation of new models of care and informed national policy for rare chronic and complex diseases. Associate Professor Zurynski’s research expertise includes transition between paediatric and adult services, health costs and out of pocket expenses incurred by consumers. She currently works closely with several consumer advocacy groups including the Consumers Health Forum of Australia and Rare Voices Australia. She is passionate about engaging health consumers in research and policy development.
