Health literacy and consumer-centred care: at the brink of change?

This is an edited version of the Ian Webster Health for All Oration to the annual forum of the Centre for Primary Health Care and Equity, presented by Leanne Wells, CEO of the Consumers Health Forum of Australia


We are at a point of flux in health policy decision-making where we need fresh thinking to tackle the paradox of these times: contemporary health care’s enormous potential to preserve and extend life at a time of avoidable disparity in health outcomes.

Australia has been stalled for too long in the development of a fit-for-purpose primary health system, when we know that the globe’s highest performing health systems have strong primary health care sectors.

We need a modern system that serves our needs now, not as they were thirty years ago when Medicare started.

And that means primary health care access for all including the most vulnerable and disadvantaged in our society.  

Now we have a two significant reviews, one into the Medicare Benefits Schedule and the other, the Primary Health Care Advisory Group -  of which I am a member – looking at how to provide better care for people with complex and chronic conditions including mental illness.

Cynics might say ‘this is all about GPs: what they do and how they are paid’. 

To a large part, it has to be.  We’d all agree that fee-for-service funding does not serve the management of complex, chronic disease at all well.

But it will be a lost opportunity if primary health care lacks solid investment in health literacy, self-management and patient activation programs so that consumers can take their rightful place as partners in care.  

Consumer health literacy and empowerment is not an optional extra.

Patient participation, health literacy and empowerment must be a main theme in the PHCAG report and the government’s response.

It seems to me that this time around – after over a decade of reviews and reports - we have somewhat of a perfect storm.

There are triggers for looming big shifts, like mounting evidence that focusing the health system on the patient improves outcomes, is more effective, more cost efficient and more satisfying for both patient and clinician.

And the growth in chronic disease and the development of information technology are driving advances in individualised care.  Self-directed approaches to human service delivery are being spearheaded by the NDIS.

Change is also being driven by pressure to reform our fragmented and increasingly unaffordable healthcare system, not least by governments facing ballooning health costs.

Australia’s leaders are now seeing primary care as the main game.

We’ve got a Health Minister who is on record as wanting to act.

We’ve also got a consumer sector that is rapidly growing in maturity and positioning itself to be a serious policy actor.

We’ve got a clinical community – notably GPs – actively canvassing new ways in which they should work and be funded. In all of this, the case for the empowered consumer is compelling. 

Health literacy and consumer-centred care are concepts where Australia has with some exceptions, shown little progress in systematically advancing.

But the growing knowledge of what makes an effective consumer-clinician relationship and the revolution in information and technology now makes it more pressing than ever for us to exploit the benefits of health literacy, the activated patient and consumer-centred care in the way programs and services are designed and delivered.

A national report on health literacy agreed by Health Ministers last year states that the complexity of the health system is challenging for everyone, contributes to poor quality and unsafe care, and may be associated with 3 to 5 per cent extra cost to the health system.

It says only 40 per cent of adults have the health literacy to meet the demands of everyday life.

Clinicians will say that, of course, they are focused on the patient in front of them. But too often it is the system which triumphs over the individual’s needs.

Patients want and need professionals who see them as more than just the ‘vessel’ of a disease to be cured.  They want to be recognised as individuals with their own unique lives.

CHF has found that the biggest drivers of complaints and dissatisfaction with the health system is almost always that consumers feel they aren’t being respected as individuals, and partners, in their own health care decision-making.

We need the system to reflect: clinicians’ education and continuing professional development that promotes patients as partners in care; consumers involved in health care research, self management programs embedded in primary care; consumer participation recognised in national safety and quality standards and associated accreditation; models of care where there’s a team of professionals looking after the consumer, sharing information and contributing to a common care plan.

It’s not money that is necessarily the big barrier here.  It is that much more challenging hurdle: human behaviour.

So what’s happening in Australia in the way of patient-focused systems?

Not nearly enough CHF would say. But there’s promise on the horizon.

The NSW Clinical Excellence Commission’s “patient-based care challenge” is one example.

Earlier this year the Commission’s Karen Luxford and co-author Stephanie Newell published in the British Medical Journal about this project.

The aim of the program introduced across NSW Health districts was to make patient centred care more broadly recognised as everyone’s responsibility from the executive through to clinicians and staff.

By October last year, after about two years, 13 districts had adopted an average of 19 of the 26 strategies.

The authors say that as the project uptake was in the early stages it was hard to judge whether it has been a success. 

Whatever the final results, we are seeing significant steps to promote the concept of consumer-focused health care.

The new Primary Health Networks, as regional system stewards, are well placed to take up this mantle.

Health Minister Sussan Ley has said that patients will have  their say, with community advisory committees to advise PHN boards “from the patient perspective”.

But success will depend on whether PHNs make consumer and patient perspectives integral, and invest in patient leaders.

The PHCAG Discussion Paper makes the point that Medicare is failing to meet the challenge of chronic care.

It says patients often experience a fragmented system, uncoordinated care, difficulty finding the right care, low uptake of eHealth and technology to overcome these barriers.

It acknowledges that patients feel disempowerment, frustration and disengagement.

A heartening feature of the Paper is the acknowledgement of the idea of the “patient as a partner in care”.

We need broad changes in behaviour and culture including: education of clinicians and consumers, incentives for clinicians to support patients to better manage their health and reforming payment systems to reflect needs of chronic and complex care

We remain hopeful that Australia takes up the opportunity to be exemplars: to be leaders rather than followers of world’s best practice in consumer participation and leadership in primary health care.


About the author

Leanne Wells

Leanne Wells

Chief Executive of the Consumers Health Forum of Australia