Health consumers as agents of change

Australia’s health system is no longer fit for purpose and central to the fundamental changes needed should be a shift towards a more wellness-focused and consumer-centred ethos.

It is time to move on from the old-fashioned notion that in health policy we pay attention only to the clinician and not to consumer advocates.

That was part of a key message I gave to an Australasian College of Health Service Management webinar on the theme Consumer leadership and collaborative partnerships: shifting gears for real change.

It is a topic which is at the heart of the mission for the Consumers Health Forum of Australia.

We advocate for a patient and person centred health and social care system and work to equip consumers and those interested in working in alliances with consumers to help shape that system.

At CHF we believe that the more choice and control consumers have over their own health and care, the better the outcome.

So what are CHF’s ideas for bringing about a system that is more consumer centred?  In 2018 CHF released our White Paper called Shifting Gears: Consumers Transforming HealthIt sets out the transformational changes needed to deliver a person-centred health care system and a program for training and developing health consumer leaders in a range of roles which would foster more dynamic and responsive health care.

It’s often the case that consumers are thought of as an homogenous group when in fact they fulfill - or have the potential to fulfill – several systemic and strategic roles in the system

Our argument is that a future state health system should be using the insights of consumers in many and varied ways such as involving them as research collaborators, as co-designers of services, as policy advisers and as community mobilisers eg. peer workforce

Governments and entities like PHNs and LHNs and the research community have an obligation to build their knowledge and capacity to work with consumers systemically, and to invest in consumer leadership in the same way we do clinical leadership.

Scope for change

The scope for positive change in the health system is enormous when we consider areas of for improvement including: 

  • Low value to high value care
  • Provider-centric to people-centric care
  • National to local integrated consumer-centred services
  • Low performing to high performing person-centred organisations
  • Siloed to collaborative, integrated care and governance
  • Information asymmetry to transparency
  • Paternalism to partnership at point of care

Consumers can be the change agents. With the right skills, consumer leaders can transform the healthcare system, helping to frame problems and insights to stimulate improvements in practice in a variety of roles in national, state and boards and governance committees.

Employing consumer leaders in organisations is an emerging practice and provides opportunities for peer support roles and building bridges between health professionals and consumers to facilitate attitudinal change andchanges in practice.

In Government policy it is vital that, at this highest level, consumer needs, diversity, knowledge, expectations and experiences are taken into full account.

Consumers can serve as mobilisers of other consumers to act around a common purpose, establishing networks and organise to raise awareness of health issues, to offer community rating of system deficits and put forward solutions.

Many well-established consumer organisations vital to national infrastructure and the backbone of CHF’s membership are a result of activated consumers stepping up in these kinds of roles.

Consumers as co-designers

In organisations consumers can work as co-designers with health service planners, providers, clinicians, managers, commissioners and other stakeholders to co-produce service models and clinical pathways.

The involvement of confident, well-informed consumers who are not afraid to challenge and ask questions can help frame the problem to be tackled and identify solutions.

User experience ensures first-hand focus on the characteristics of a service or program that will make a difference to a health outcome and the experience of care leading to better awareness of access issues, information required, more humanity and better customer care.

Consumers can add rich insights to research priority setting and assist to frame research questions as well as contribute to the design and methodology.

The involvement of consumers and the community in the translation and dissemination of research findings is especially potent particularly when the findings are such that a change in public awareness or behaviour is promoted by the results.

Consumers are involved to varying degrees in developing curriculum for professional education of health care professionals, advising on content relating to consumer-centred care.

CHF’s workforce survey of organisations representing health professionals found high levels of recognition of the benefits of patient-centred care but only 50 per cent of respondents felt their members had access to adequate resources to support a patient-centred approach.

The expert patient

Only patients fully appreciate and know about their condition (s) because it is they who experience and live with it.

The expert patient has the confidence and knowledge to work in partnership with the health care team to share decisions about their health care. They improve health outcomes by playing a very active role in their self-management, particularly of chronic and complex conditions.

There are multiple ways in which we can develop and make the most of the consumer’s value to progress in health care and policy.

These range from access to clinical and corporate governance training, to a bespoke national consumer and community leadership development program. 

Among the variety of ways CHF promotes the role of the health consumer are two initiatives in recent years: Australia’s Health Panel and Collaborative Pairs.

These projects are showing their worth in developing the influence of consumers in the health world.



About the author

Leanne Wells

Leanne Wells

Leanne was Chief Executive of the Consumers Health Forum of Australia from 2014 until August 2022