The Value of Consumer and Carer Participation in Health Services by Dean Hewson
15 June 2021
Dean Hewson is the Vice-President at the Health Care Consumers’ Association (HCCA) and a consumer representative on a number of digital health committees. Dean spoke at the Thank You event for Consumer Representatives at the ACT Legislative Assembly on 9 June 2021. His speech is below:
I’m pleased to be here on behalf of HCCA and speak about the importance of consumer and carer representation in our health system.
Forty-three years ago, a handful of people – people who used health services – sat around a kitchen table here in the ACT and discussed their desire for health care consumers to have a seat at the decision-making tables of the health services that they used. They knew that if they could bring the knowledge of the lived experience of service users to that table, it would help to make health services better. And they wanted consumers to be recognised as stakeholders to whom health services were accountable.
Out of their passion and commitment to these ideas grew the Health Care Consumers’ Association.
Twenty-five years ago, the value of our continuing contribution to improving local health services was recognised with ACT Government funding for the first time. We employed our first staff member. As relationships developed between consumer representatives and health services, and their contribution became recognised as valuable, consumers began to be systematically included in service design and governance across the ACT public health services.
In 2011 the first Australian National Standards for Quality and Safety in Health Care were introduced. This moment recognised and enshrined, across Australia, in every health service, the central role of partnerships between consumers and health services, in ensuring that health services provide high quality, safe and consumer-centred care.
Today, HCCA has a pool of around 50 consumer representatives and several staff who sit on around 150 committees at every level and in many areas of health. And they are joined at those tables by consumer and carer representatives from the ACT Mental Health Consumer Network, Carers ACT and a number of advisory and condition specific groups.
Consumer and carer representatives work not only in public health services, but in private services, including the governance and support of primary care services. Together, we work not only in shaping service design and delivery, but in influencing the policies, at a local and national level, that govern those services.
Consumer representation began with advocates becoming members of health service committees. Today the opportunities for consumers to contribute to health services are much broader, and the places their voices are heard are much more diverse.
Since 2008, consumers have been contributing to the design and functionality of health infrastructure in the ACT. Health buildings represent a large investment of money and must service the community for many decades. Poor design can mean that consumers must live with problems accessing health care that are difficult and expensive to resolve. Consumer input which begins early in the design process and continues through to completion of building and the creation of models of care improves access, improves consumer experience of care, and the quality of the care provided.
In 2009 HCCA began engaging with digital health, and the many aspects of health service delivery that involve technology. This too, is about ensuring that digital architecture and online content supports consumer’s access to health care, access to their own records, helps them understand information, and participate in their own care. There are real opportunities here for helping parts of the community that can struggle with understanding and getting health care to have better access.
Consumers are increasingly becoming involved with health research. Not just as the subjects of research, but as part of the team designing research, and also carrying it out. Consumer involvement ensures that topics of research impact those aspects of healthcare that really matter to consumers. HCCA looks forward to developing the capacity of consumers to participate further in research.
Today, the breadth of work of consumer and carer representatives must seem extraordinary to those original consumer advocates. And yet, some of the advocacy issues would be very familiar. HCCA is proud to be part of the consumer movement and values the relationships built over many decades that provide the foundation for our work. It’s been some time since we’ve had an event like this which asks us to pause for a moment to recognise and appreciate the advocacy efforts of consumer and carer representatives. So on behalf of HCCA I sincerely thank you all – consumer and carer representatives and advocates and health service and government partners – and look forward to the next decades of collaboration.
The ACT Health Care Consumers’ Association (HCCA) was a creation of its time — 1970s Australia. It came into being under the stewardship of a small group of consumers in Canberra who believed that collective action could influence positive change in the ACT health system. In 2018 HCCA published a history for the 40th anniversary of incorporation. You can read the book online here.