Clinician Connect

Consumer engagement – nothing about us, without us

By Dr Anthony Brown

29 Jun 2021 Reading time approximately

Dr Anthony Brown, Executive Director of Health Consumers NSW, shares why we should always involve health consumers in the decision-making and governance processes for the delivery of health services.

Consumer engagement is, at heart, the range of activities that involve people who use health services (consumers and communities).  It is also known as involvement, partnering or participation in a health services’ decision-making, policy development, service delivery, research activities, evaluation and governance processes.

Patient and consumer involvement is not new. The history of consumer involvement is at least 50 years old and grew out of the frustrations and activism of people who have been underserved by health services.

The feminist, gay rights and other civil rights movements of the 1960s, 70s and 80s informed consumers of health services – most notably consumers of mental health services, people with disabilities, and people living with HIV/AIDS – to not only share their experiences and voice their concerns, but also to demand a seat at the table in designing how services were delivered to them.

So why engage with consumers?

For many of us, the most important reason to engage is that such participation is a human right. The World Health Organization’s famous Declaration of Alma-Ata recognises that:

“… people have the right and duty to participate individually and collectively in the planning and implementation of their healthcare”.

This is reflected in the Australian Charter of Healthcare Rights that explicitly includes the people’s right to participate in their healthcare.

There is growing evidence that engaging service users also leads to improved health outcomes for patients; as well as safety and quality improvements for services. The ACI collected much of this evidence in their publication Consumer and Community Engagement: A review of the literature.

…engaging service users also leads to improved health outcomes for patients; as well as safety and quality improvements for services.

Perhaps less easy to quantify is the fact that good engagement strengthens and improves relationships with consumers and communities. Open, trusting relationships are at the heart of genuine engagement.

People who can see how their experience and suggestions have led to system improvements are more likely to become advocates and supporters of those services, as well as being willing to become involved with future engagement work. Engagement is an iterative process.

Learning through shared knowledge and experiences

The importance of partnerships and relationships with consumers can be seen throughout NSW Health’s Elevating the Human Experience. Collaborative partnerships between patients and health staff are one of the key focus areas of this ground-breaking strategy.

I believe the most important reason to engage with patients is the growing expectation from health consumers themselves. Health and community services are becoming more participatory; services and consumers are better connected; and organisations such as Health Consumers NSW continue to build bridges between different consumer groups (and consumers and services), so we can better learn from each other’s experiences.

Permission has already been given to people to participate (thanks to policies, accreditation and shifting expectations) and health consumers are ready and willing to be involved.

Health Consumers NSW is the peak health consumer organisation in NSW. We are an independent charity that works to ensure that the consumer voice is heard and that health consumers, carers and their families are involved in the decisions that impact them. You can find out more about our work and ways we can help support your own consumer engagement efforts on our website.

About Dr Anthony Brown

Anthony is the Executive Director of Health Consumers NSW (HCSNW), where he works to bring patients and their families into health services’ decision-making and governance processes. Anthony has more than 30 years’ experience working for (and with) many consumer and community organisations, where he has worked with young people, older people and LGBTIQ+ communities. Prior to working at HCNSW, Anthony spent 14 years at the Men’s Health Information and Resource Centre at Western Sydney University. Here he led research projects looking at men’s access to and engagement with health, aged care and community services. In 2014, he completed a PhD investigating retired men’s engagement with their communities.

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