Why patients matter: the role of consumer advocacy in healthcare

Why patients matter: the role of consumer advocacy in healthcare

At the end of the day, your average person only knows as much about the medical system as has been relevant to them, and they’re far from medical experts.

But the reality is, patients are actually the main consumer of the healthcare system. In any other industry, consumer research is an important factor. So should that be the case in healthcare?

A recent webinar hosted by the Consumers Health Forum of Australia tapped into the issue, exploring the role consumers play.

For the event, Consumers Health Forum of Australia invited three expert consumer representatives to share their powerful personal stories, experiences and insights.

There was Melissa Le Mesurier, who became a consumer advocate and patient representative when your young son was diagnosed with cystic fibrosis, and more formally later when she was diagnosed with bladder cancer. Melissa talked about the value of consumer-led research in shaping research agendas and improving outcomes.

Darryl O’Donnell, a former CEO of Health Equity Matters and a leading figure in Australia’s HIV response, shared his journey of community-driven research. He emphasised the importance of collaboration between researchers and communities in addressing pressing health issues, highlighting the role of advocacy and education in driving change. O’Donnell’s insights provide valuable lessons for building more equitable and effective health systems.

Leonie Young, a breast cancer survivor, has become a passionate advocate for patient rights. Diagnosed in the late 1980s, she embarked on a journey of self-advocacy and community engagement. Her involvement in organisations like Reach to Recovery International and ANZUP’s consumer advisory panel has significantly contributed to improving outcomes for cancer patients. Young emphasises the importance of patient-centred research, advocating for the inclusion of diverse voices and experiences in shaping healthcare practices.

Through their stories, the three participants discussed the challenges currently faced by consumers in getting involved in research. These include limited funding, lack of training, and the need for greater recognition of their expertise.

So how could we get consumers more involved in health research? To overcome the challenges, solutions suggested included providing adequate support and resources for consumers to participate meaningfully in research.

By leveraging their unique perspectives and experiences, consumers can help drive innovation, improve patient outcomes, and ensure that research truly benefits those it aims to serve.