According to Vincent Dumez, Centre of Excellence on Partnership with Patients and the Public, the University of Montreal, we are in the middle of a patient-led innovation revolution. Does that make the 800 people who attended the first joint Australian and New Zealand Consumer Experience and Leadership in Health Summit last month revolutionaries?
“No, like many health professionals we simply aim to make things better,” says Pip Brennan, consumer representative and executive director of Health Consumers’ Council WA who points out that many are in it for the long haul. “Consumers are not suddenly going to wake up and be less invested,” she says. Like Pip, many consumers who spoke at the summit are realistic about their role, “Change is usually incremental not transformational, and there is much we can do when we work together.”
The Consumers Health Forum of Australia (CHF) Shifting Gears 2021 virtual summit was held over three days in March and was the first Australian and New Zealand conference focused on consumer leadership and experience in health care. CEO of CHF, Leanne Wells says, “There is growing acceptance that people-centred care leads to improved outcomes and a more efficient health system.”
The Productivity Commission’s Shifting the Dial report 2017 recommends that all Australian Governments should re-configure the health system around the principles of patient-centred care within a five-year timeframe.
Summit participants mostly agreed that attitudes have changed greatly from the early days of ‘tick a box’ for a consumer but there is still a way to go. As a group, consumers have a full view of the health system. Some will begin their journey as a young person with chronic illness and will have a lifetime of lived experience to draw upon. If this perspective is left untapped, research, clinical care, the health system, and the economy will be the poorer for it.
The youthful voice was an exciting aspect of the summit with participants from the CHF Youth Health Forum championing co-design, and urging collaboration with end-users to clarify issues and develop solutions.
VCCC strives to involve people who can confidently bring the consumer voice to the table. The alliance has recently established ten new strategic programs with the aim to improve cancer outcomes across the state and consumers are involved with governance on each of the program steering groups.
“The opportunity to attend the summit was offered to new and existing consumers at the VCCC as part of professional development,” says consumer involvement manager, Dr Joanne Britto. “It was a chance to learn from others and share our own initiatives.” Consumer representative George Kiossoglou was impressed by the broad range of views and ideas. “Canada has embedded consumer engagement through the Department of Medicine as part of the education of new medical students. This means that as the students go into the workforce, they take this knowledge with them and make it an integral part of their work.”
Kathleen Wilkins agreed that training is key, “I was impressed with the Breast Cancer Network Australia consumer representatives training program as this program consists of elements that consumers question…how to represent the broader experience? The program has a formal learning structure enabling the shift from personal story to informed perspective, advocacy, and representation of diversity within the community."
A compelling proposition emerging from the summit was to change the questioning of patients to ask not 'what is the matter with you' but 'what matters to you?'
Read about the VCCC Consumer Engagement Toolkit and new steering group members.
