Decisions about health care services, policies and systems have traditionally been the domain of medical professionals, allied health workers, researchers and policy makers.
The voice that was consistently missing in these discussions and decisions was the ‘consumer’ – the recipient of the health care service.
That is now changing as the consumer leadership in health movement gains momentum. The movement consists of consumer organisations, individual consumers working to change systems, and includes some health care professionals who want to support the movement’s goals.
Dr Brett Scholz, an early career researcher from the Australian National University (ANU) Medical School, is one such proponent for the inclusion of consumers in health care decisions.
His research in this area has won him the Australian Capital Territory 2021 Young Tall Poppy Science Award, and along with his colleague Professor Imogen Mitchell a joint nomination for the Research Australia Awards to be announced in December, this year.
“A consumer knows the health system in a completely different way to a medical professional. They’ve had to deal with the noisy waiting room as they anticipate the results of their cancer screening, they’ve experienced the limited selection of food options from the hospital café as they undergo their third week of outpatient recovery, and they understand how certain experiences are stigmatised or can marginalise – and yet their expertise often goes unrecognised.”
“Their experience provides much needed balance in the decision making process,” Dr Scholz says.
“When I started my research career some years ago, I was lucky enough to work in an organisation that had an identified role for a consumer researcher. It helped me become aware of how I had been oblivious to the expertise and invaluable knowledge consumers have.”
That realisation led to a paper aptly named “How did I not see that? Perspectives of nonconsumer mental health researchers on the benefits of collaborative research with consumers.”
It was also the start of including consumers within his own research and advocating for them to be included in health care decision-making more broadly.
“Over the past six years I’ve co-conceptualised and co-authored about two-thirds of my research with people who have a lived experience of illness. I also try to collaborate with consumers in the delivery of my teaching so that medical students can learn first-hand about consumer experiences and see me modelling what a partnership between a consumer and another health professional might look like.”
As for the future, Dr Scholz would like to see a wider variety of consumer groups included in decision making across the health care sector, such as people with disabilities, Aboriginal and Torres Strait Islander people, older adults and younger consumers.
“I’m focussed on continuing to support the expansion and extension of consumer led work so that we end up with a health system that truly partners with consumers in policy, service, education and research.”
Thanks to his Tall Poppy award, he’s been given another platform from which to raise awareness about this important work.
“When I think about research work that wins awards, qualitative research that advocates for social change is not the type of work that typically springs to mind so I’m very thankful and happy that the work I love to do has been recognised and I’m able to raise further awareness about consumer leadership.”