The Annual Forum of the UNSW Centre for Primary Health Care and Equity – held in Sydney last Friday – could not have been more timely.

Forum participants heard about the importance of building genuine partnerships with communities in successful primary health care initiatives, as journalist Amy Coopes reports below for the Croakey Conference News Service.

Beneath her report is an article by consumer health advocate Leanne Wells, based upon her keynote presentation to the Forum: Health literacy and consumer-centred care: at the brink of change?

And thanks to all those tweeting #CPHCEforum (check the analytics at the bottom of the post).


Amy Coopes writes:

As hearings kick off into primary health care reforms aimed at reducing the cost burden of chronic disease and better meeting the needs of the chronically ill, some real-world success stories emerged at the annual Centre for Primary Health Care and Equity forum.

A keynote from Consumers Health Forum of Australia CEO Leanne Wells sparked robust debate among delegates on health literacy, engaging communities and the patient-as-consumer.

Wells is on the Federal Health Department’s Primary Health Care Advisory Group (PHCAG), and gave some interesting insights into the committee’s thinking as Australian health care finds itself at a crossroads.

A McKinsey paper prepared for the group states that the rate of increase in healthcare costs is “unsustainable”, with costs having risen from 7.3 per cent of GDP in 1993 to 9.1 per cent in 2011, with the growth largely driven by hospital expenditure.

The paper also shows that Australia spends just 1.9% of its total health budget on prevention and public health, and is ranked 13 out of 19 OECD countries for preventable hospitalisations, which account for 6.2% of all admissions nationally (8.1% in the public system).

The McKinsey report found that Australia ranks fifth behind the UK, Switzerland, US and Canada on consumer engagement in health, and 14.3 per cent of people who see three or more health professionals for a condition report issues caused by a lack of communication.

This rises to 18.6 per cent for people living in outer regional, remote and very remote areas, who also report waiting longer than is acceptable for a GP appointment – 1:3 versus 1:5 in the city.

Startlingly, only 65 per cent of Australians say they know how to get advice on chronic conditions, according to McKinsey, and Wells said only 40 per cent of adults can follow health messages and make sensible decisions based on them.

So how can the health and medical community better connect with and be more relevant to the people it aims to serve?

Two success stories took centre stage at the forum, with valuable lessons to share from working with, within and for communities.

The Gudaga project: partnership matters

The Gudaga project
, a longitudinal cohort study of 149 Aboriginal children from the Tharawal nation in Sydney’s Campbelltown region, will celebrate 18 years collaborating with the local community in October.

Holly Mack told the forum Gudaga’s success lay in its partnership with the Tharawal community and their ownership of the project.

Gudaga means “healthy baby” in Tharawal and was designed after yarning with local women about their concerns for children in the community. The research proposal was drawn up in consultation with the women and the project logo was locally designed.

Retention in the program was so high (85 percent) because local women were trained as project officers able to liaise with the mothers and carry out the research.

In a short tribute video played to the forum, Tharawal Aboriginal Corporation CEO Daryl Wright said the researchers’ partnership with the community in which they were treated and regarded as equals had been key to the project’s success.

The original cohort of Gudaga children are about to start high school and the next phase of the project has begun – Bulundidi Gudaga – following a new cohort of children, born to at-risk mothers, from antenatal to two years of age.

“We’ve now come full circle, feeding the results of our research back into projects in the community – a tree of which Gudaga is the trunk,” said Mack.

Can Get Health: engaging with community

Partnership was a common theme in success for the Can Get Health project at Canterbury, in Sydney’s inner west, which is home to 120 language groups (64 percent speak a language other than English at home) and where 43.6 percent of the population are low-income earners.

Can Get Health targets at-risk CALD communities for preventative health programs, with four priority areas – mental health, kidney disease, cardiovascular disease and diabetes – selected across four groups: Chinese, Bangladeshi, Arabic and Rohingya.

Project officer Penny Finlay told the forum social determinants were a major issue in Canterbury, with unemployment and other issues eclipsing health as a priority.

“Health wasn’t on most people’s radar, they needed a job, a safe house,” she said.

Public health programs were developed in conjunction with local health professionals and community representatives, including a mental health first aid initiative targeting the Chinese community and the stigma associated with saving face.

“One person said this has really changed my life and I will take it back into my community,” she said.

It had taken nine months to establish contact with the Rohingya community and overcome their experience of authority which was ‘to be shouted at’ said Finlay.

As well as increasing community literacy on a range of issues such as nutrition, Finlay said Can Get Health had resulted in a new understanding among non-government organisations working in the district of health’s inextricable link to other issues, whether it be housing security or domestic violence.

Can Get Health’s major lesson had been the importance of social, physical, political and economic context to improving health literacy and access – plus time, tenacity, patience and persistence, she added.

Asked for her tips from the Can Get Health experience, Finlay said it was vital to give something of yourself to gain trust.


Health literacy matters

Health literacy was a hot topic at the forum: Jane Lloyd from UNSW’s CPHCE told delegates it was something of a mot du jour in medical circles, with more than 4,000 citations from 10,000+ authors in 59 countries.

Far from a fad, she said it was a critical barrier to accessing health, to self-care and to building community capacity and networks.

But there was conceptual confusion about what health literacy actually was, and a problematic tendency to conflate it with speaking English and with the concept of empowerment, which Lloyd likened to ‘conjoined twins – related but not the same thing’.


There were several interesting comments and questions from the floor and presenters on this issue during a panel debate with Wells, Chris Shipway from NSW Health’s Agency for Clinical Innovation, Anthony Brown, executive director of Health Consumers NSW and consumer representative Mary Potter:  

Lots of debate online too, where #CPHCEforum was a trending topic:


Brown argued that health literacy itself had social determinants and this was too often overlooked. Involving the community in the future design of services would bypass the problem of literacy because solutions would be inbuilt, he added.

Shipway said the question of engaging communities versus individuals was a critical one that delivered very different results, particularly in disadvantaged areas.

He pointed to strategies such as 1 Deadly Step, which uses NRL players to target chronic disease in Aboriginal communities, as a successful community-level initiative that improved individual outcomes.

Shipway said there needed to be a paradigm shift away from the health prism to a model where the doctor asked ‘what do I need to do today to give you what you need?’, replacing the consumer lens with a rights-based perspective.

And some Twitter-snaps from the day: 



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

Leanne Wells writes:

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.

• 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. See the full presentation here.

Meanwhile, GP Dr Tim Senior commented on the oration, via Twitter:


• Read the #CPHCEforum Twitter transcript here.

Thanks to Symplur for these analytics.

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