Consumer Advocacy
Consumer advocacy is an approach where individuals with lived experience work to champion the rights, needs and priorities of the broader patient and carer community across healthcare, research and policy development. By doing so, consumer advocates can ensure that the lived experience perspective is embedded in decisions being made. Consumer advocates take on roles like being a co-researcher or as a consumer representative on steering committees or advisory panels.
A group of melanoma survivors, patients and carers were brought together by a consumer organisation to work with public health officials and policymakers to improve skin cancer prevention policies. Together, the consumer advocates organised and led public consultations, petitions and media campaigns to embed sunscreen affordability, workplace sun safety and accessible skin checks into current health policies. Their work led to key policy reforms, including government subsidies for sunscreen and sun-protective clothing, mandatory sun safety programs for staff in high-risk industries and expanded access to skin cancer screening rebates. Additionally, the advocacy group raised public awareness of skin cancer, with improvements seen in early detection and accessibility to prevention strategies enhanced.
Consumer advocates with lived experience of depression and anxiety partnered with mental health researchers and clinicians to ensure that research outcomes met the needs of the community. They participated in advisory panels, provided feedback on study designs, advocated for holistic and patient-centred approaches and ensured that outward facing research materials were sensitive and appropriate to participants. The advocacy work from these individuals led to a shift in research priorities with a greater emphasis on personalised treatment plans, digital mental health tool development and implementation and long-term effects of psychiatric medications. Additionally, they organised community engagement initiatives to increase awareness of the research and reduce the stigma of living with a mental health condition. As the research became more relevant and responsive to patient experiences, translation of these findings were accelerated into clinical practice, leading to more effective, inclusive and accessible treatments.