Letting the people have a voice in health care

Over the past two years, Australians have become acutely aware of the impact of changing health policies, requirements and advice have had on their daily lives as we have battled the Covid-19 pandemic.

We have witnessed first-hand the stresses on the health and aged care systems, whether it’s the staffing collapse in many nursing homes, stop and start pausing of elective surgery, the inability to visit loved ones or the over-crowding of emergency departments.

Too often patients in distress have no one to champion their special needs, whether arising from lack of communication on Covid care, failure to respond to complex mental health issues or difficulties accessing integrated care for chronic conditions.

The impact this has had on patients and consumers has been immense. While the decisions behind the Covid-driven changes have been crucial to responding to the threats of a pandemic, they have largely been made by the usual faces around the table when it comes to health care policy. That is fine up to a point but there is one face too often missing: consumers.

Patient participation involvement in health system decision making is under-utilised.

How do we ensure those that experience the health system get a voice when it comes to decision-making?

The answer lies in a concept that is already being put to good use in the United Kingdom and Canada and it involves developing a pipeline of consumer leaders with the skills and expertise to occupy high level positions in the health system. 

It’s why the Consumer Health Forum is campaigning for federal government support for an Australian Health Consumer Leadership  Academy. 

It mirrors initiatives such as Social Impact Leadership Australia, designed for CEOs of for-purpose organisations, and Australian Mental Health Leaders Fellowship operated by the National Mental Health Commission. 

At its core, consumer leadership is about putting people at the centre of decision-making – not as an afterthought or as a box ticking exercise but actually empowering people to have a voice that is heard and acted on. 

There is a growing acceptance that person-centred care leads to improved outcomes and a more efficient health system. 

This was identified by the Productivity Commission in its Shifting The Dial Report in 2017 when it declared that all Australian Governments should re-configure the health system around the principles of patient-centred care, to be implemented within a five-year time frame: a declaration the Treasurer, Scott Morrison, supported.

System-wide patient influence requires developing and recognising health advocates, giving them the credentials they need so they are better placed to be employed in decision making and influencing roles.

Too often, inquiries, royal commissions and committees conclude that tragic events and poor health and economic outcomes could be prevented if we put people at the centre of decision-making at the beginning of the process.

Hospital boards and health agencies appoint consumer representatives who are keen to advocate for the consumer but may not have the knowledge, professional support or pay to press for optimal outcomes in the consumer’s interest.

Medical science in Australia already acknowledges the need to involve consumers in research decision-making but it is often a tokenistic appointment made to meet institute protocols and to give protection to research ethics committee consent processes. By implementing a formalised system of consumer leadership, through the establishment of the consumer leadership academy, we can get the early decisions right and prevent sub-optimal outcomes from ever occurring.

Establishing an Australian Health Consumer Leadership Academy would provide a formal qualification that provides a benchmark for consumer leadership and best practice and a network of graduates equipped to occupy senior decision-making and advisory roles.

Building competent and capable consumer leaders is internationally recognised as essential to drive positive change in the health system.

This is the missing piece of healthcare policy development to ensure that you and your loved ones are better supported and treated by the healthcare system.

This article was first published in the Daily Telegraph, Thurs 5 May 2022| Reproduced with permission.


About the author

Leanne Wells

Leanne Wells

Leanne was Chief Executive of the Consumers Health Forum of Australia from 2014 until August 2022