Have your say: time for consumers to be “makers & shapers” in health care, not just “users & choosers”

This article was first published in Croakey, a social journalism project that enables debate and investigations of health issues and policy.

Has patient-focused care kept pace with the profound advances we see in medical treatment?  Medical science now knows more about our bodies than ever – from the tiniest cell and virus to the electricity in our brain.

Medical specialists and surgeons can treat the organs and other parts of our bodies with finest precision. Yet contemporary health care has still to harness the full scope of scientific knowledge and technology to address fundamental patient requirements, like access to the right care at the right time and at the right place.

Heart transplants are routine yet many with everyday complex chronic conditions like diabetes struggle to get the right mix of care. And often that’s not because of a lack of resources but a lack of experience-driven and evidence-based service delivery, now more attainable than ever with digital technology and our growing knowledge of what works better in health.

That is not to say that clinicians aren’t delivering evidence-based clinical care necessarily but that we are not organising care teams and the system in a way that optimally involves patient advocates in their design to ensure maximum benefit and targeting of resources.

Few may know that this is Patient Experience Week.  As the patient living with chronic illness learns, experience with a disease and its treatment can play a pivotal role in helping produce better outcomes.  It might be as simple or as complicated as navigating through an increasingly complex system to the most appropriate care, or ensuring consumers can readily access their health records.

Those who are not frequent users of the health system might believe that Australia does provide world standard care.  Australia’s ranking is creditable at the level of high-end acute care like heart transplants and we have an impressive health and medical research report card.  But at the everyday level of care that so many depend on there are deep gaps in coordination and integration of care, between hospitals, doctors and allied health providers.

The Productivity Commission, an agency of the Australian Government located within the Treasury portfolio no less, in its recent Shifting the Dial report on productivity in health, detailed a long list of problems, including poorly integrated primary and hospital care, failure of information to follow the patient, meagre funding on long-run health prevention measures, and lack of localised funding to generate locally efficient solutions.

The report also cites a lack of patient-centred care, including insufficient attention to patient experiences and outcomes, weak scope for partnerships between patients and clinicians, poor patient literacy or knowledge about the health system, and low levels of choice.

There are well-based remedies for these inadequacies, the report says.  Developing patient reported experience and outcomes measures, using My Health Record to improve information flows and identifying high users of the health system would generate improved clinical outcomes, empower and self-management, help reduce medication problems and mean patient convenience.

Not least, such measures would lower costs, says the Commission.

It’s not as if the Commission has stumbled upon a fresh revelation.

Two years ago a roundtable of 35 health experts called for the development of a National Vision for Australia’s Health 2025 to set out principles for consumer-centred health care.

The expert roundtable, hosted by the Consumers Health Forum of Australia and The George Institute for Global Health, declared Australians should be taking a more decisive and active role in their own healthcare.

Currently the health care system is designed to suit health care providers rather than those who use it, the roundtable heard.  Yet it should be consumers who are the makers and shapers of the health system rather than the users and choosers.

The roundtable’s blueprint for change included: involving consumers in governance at all levels of health care and research and making consumer-centred practice a core competency for healthcare professionals in working with patients as part of multidisciplinary teams.

From a consumers’ viewpoint, we have to ask ‘When will policy and actual implementation catch up with the narrative of consumer-focused health care?’

A chronic barrier to progress has been resistance to behavioural change and cost.  Health investments tend to go where providers and politicians argue they get the best bang for the buck and to purposes the decision-makers feel most comfortable with.

But as the Productivity Commission and experience is showing: the best bang for the buck is often reaped by ensuring the best interests of patients are met.

And those interests often reflect the lessons learned from the experience of patients.  Patients and their experience of care are the hidden assets in our health care system.


About the author

Leanne Wells

Leanne Wells

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