Involve and engage

The role of consumer representatives within the Australian healthcare system has evolved significantly over past decades, with quality partnerships benefiting the community and those involved in advancing cancer research, education and clinical care. 

National engagement

Before you formalise a consumer engagement program, you may benefit from engaging with work already undertaken.

For health services, the National Safety and Quality Health Service Standard aims to create health service organisations in which there are mutually beneficial outcomes by having consumers as partners in planning, design, delivery, measurement and evaluation of systems and services.

The new partnering in healthcare framework from Safer Care Victoria aims to help health services involve consumers to deliver care that is safe, person and family centred, equitable and clinically effective.

For medical research, NHMRC recognises consumers and community members as beneficiaries of advances in health care. It naturally follows that health and medical research should develop processes and systems to incorporate and support sustainable consumer and community involvement.

Funding bodies such as the Victorian Cancer Agency and Cancer Australia require researchers to actively involve consumers and the community in their proposed research. Cancer Australia values the integral role of consumers in cancer control with evidence to suggest that involving consumers leads to improved health outcomes, improved safety, a more trusted health system and a more satisfied workforce.

A nationally regarded spokesperson is Anne McKenzie AM who has worked in consumer advocacy and engagement at the Telethon Kids Institute for more than 15 years. In 2016 she established WA's Consumer and Community Health Research Network. She is also a senior consumer representative for the Consumers Health Forum of Australia and serves on key state and national committees.

Anne has conducted consumer workshops for researchers at the VCCC and has contributed to the Cancer Research subject, part of the Master of Cancer Sciences postgraduate online course collaboratively developed by the VCCC and the University of Melbourne.

International engagement

These peak bodies, known for their public and patient involvement in Canada, the UK and the US, provide good evidence for keeping end-users front-of-mind:

SPOR (Canada) is about engaging patients, their caregivers, and families as partners in the research process. This engagement helps to ensure that studies focus on patient-identified priorities, which ultimately leads to better patient outcomes.  

INVOLVE (UK) was established in 1996 and is part of, and funded by, the National Institute for Health Research, to support active public involvement in NHS, public health and social care research.  

PCORI (US) was established to fund research that can help patients and those who care for them make better-informed decisions about the healthcare choices they face every day, guided by those who will use that information.