Leanne Wells and David Butt

Kevin McLeod’s Grand Designs television series offers a fitting metaphor for the Health Care Homes we are building in Australia.

We are beginning with an existing structure that needs much work to turn it into an effective and comfortable home offering all the features we expect in the 21^st Century.

And as is so often the case in Grand Designs, many of the hopes for Health Care Homes are highest in rural areas.

Kevin McLeod shows us, on the one hand, what customisation, good design, good scaffolding, sound planning, money and innovation can buy.

And the frustrations and set-backs! The sheer commitment and persistence that are needed to get the best and remove the worst out of the existing structure.

With the Australian Health Care Homes (HCH) program, we certainly don’t want to see good policy wasted on poor implementation, particularly in rural and remote areas where need is greatest.

The Consumers Health Forum and the National Rural Health Alliance are strong advocates for the Patient Centred Health Care Home (PCHCH) model. This Grand Design is a once in a generation primary health care reform and it’s really important to get it right.

We must make sure it’s designed by the experts: the experts in primary health care delivery and the experts in the management of their own care.

More critically it’s primary health care providers, in most instances based on general practice and Aboriginal Community Controlled Health Services and their equivalents, and the consumers of their services, who as the two key ‘actors’ have to do something different, who have to embrace and drive the change and adoption:

• General practice by reshaping their practices and systems, and pursuing innovative ways to deliver multidisciplinary care

• Consumers by having confidence in the model, wanting to enrol and being willing to take on a new approach to their care.

The Consumer Perspective

So what’s the consumer perspective on all of this? We need to start with our experience of the current system: otherwise we won’t know what we are trying to fix.

The extensive surveys and consultations conducted by the Primary Health Care Advisory Group (PCHAG) showed repeatedly that people with complex chronic disease see a system that is unfathomable – it’s complex, not connected, out of reach, sometimes expensive, difficult to navigate.

And in rural and remote Australia this is compounded by poor access to services.

The Promise

So what’s the promise in this grand design of a HCH?

It’s been a long time since we’ve seen all the stakeholders – GPs, nurses, allied health providers, Aboriginal Health Workers, consumers, researchers and politicians alike - line up in agreement that this is where we need to take things.

The HCH must not be just a change in our payment systems - but a change in the way care is delivered that’s long overdue.

HCH must be more than a hospital admission avoidance program. It must deliver primary health care transformation – a modernisation of Medicare and a way to shift us away from the limitations of fee for service, ‘throughput’ medicine towards a more blended payment system and to have people take more control of their health care.

The Kings Fund in England has published a report about what it takes to put people in control of their own health and care, setting out eight key forms of individual involvement:

• Engaging people in keeping healthy – HCHs must integrate this focus and include lifestyle risk factor management and advice, promoting wellness integral to chronic disease management and supporting their journey to better health literacy and self-efficacy.

• Shared decision making – doctor and the patient work together to make decisions about care that weigh up options, clinical evidence and the patient’s informed preferences.

• Supported self-management – HCH has to build in programs, supports and services helping people make choices and decisions to manage day to day

• A personal health or social care budget – a bit of a stretch in Australia, but we are seeing this in disability and aged care reform. It’s been recognised that there are better, more flexible ways to fund more customised care.

• Involving families and carers – goes without saying

• Choosing a provider – already a HCH design feature

• Taking part in research as part of your care and treatment – we need to see patient reported experience and outcomes built in to inform national evaluation and improvements at the practice level

• Evaluating services through feedback – already done by many practices in various largely informal ways, but we want to see patient feedback being a central part of data collection and quality improvement.

The promise is that people with chronic disease will get the “grand design” in personalised and transformative care.

Caution in design

CHF ran a Roundtable with the Royal Australian College of General Practice (RACGP), George Institute and Menzies Centre, (see https://chf.org.au/sites/default/files/patient-centred-healthcare-homes-in-australia-towards-successful-implementation.pdf ) which outlined the main implementation challenges as we saw them.

Key questions that need to be answered include:

• Is there a clear and shared vision for PCHCH

• Have the core elements been defined in ways that are operationally relevant?

• Importantly for rural areas, have the core elements been defined in ways that can be adapted for, and are achievable by, local communities?

• Is the health workforce in place to meet the range of needs and if not, can it be recruited?

• Is there sustainable funding that will allow innovations such as including pharmacists, health coaches and traditional healers in the team?

• Will the funding meet the higher needs of underserviced populations?

• Do we have the right systems for monitoring, sharing records and using data for improvement?

• Do we have the right communication strategy to encourage enrolment?

The rural perspective

There are challenges – and rewards – from working in a rural setting.

We know from the National Rural Health Alliance that on average, rural people don’t enjoy the same standard of health and wellbeing as those in cities, or the same access to health services.

People in rural and remote Australia have more health risk factors that result in a higher prevalence of chronic disease and poorer access to the primary health care services through which chronic conditions can be addressed.

There is little choice about primary health care provider- fewer doctors/fewer practices, and also limited access to allied health.

There are limitations to telehealth due to technological and infrastructure barriers.

And there’s poorer access to self-help because of fewer organised patient groups and poor internet access.

You could argue that rural practices already operate as health care homes because of this – so change management may not be as hard as in larger urban communities. Many Aboriginal Community Controlled Health Services and their equivalents also provide good models of Health Care Homes.

In rural areas, HCHs need to be seen to address some of the other issues including team access to allied health providers. It is not clear how the current model will achieve this.

Their need is for tailored packages. We are concerned that a one size fits all approach will fail to meet local needs under the plans in Stage 1 of the HCH demonstrations.

Five of the Stage 1 regions are identified as having regional, rural or remote locations

• Country SA

• Hunter New England and Central Coast

• Nepean Blue Mountains

• Northern Territory

• Tasmania

So the potential is there for significant change that benefits rural consumers.

What do we need to measure over next five years?

Voluntary enrolment for consumers means they have to see the new model delivering benefits for them.

Consumer experience needs to be central to any evaluation.

Short term evaluation 1-2 years should show if consumers’ experience of care has improved in areas like:

• Continuity of care

• Patient experience

• Knowing where to get information about health issues

• Improvements in health literacy for participants - to be partners in care

Longer term we would want to see improvement in health outcomes

• Slowing in increase in severity of disease

• Greater uptake of allied health where appropriate

• Decrease in avoidable hospitalisations

Aids to connected care

All HCH participants will have a MyHealth record and will need to use it.

The urban/rural digital divide challenges reliance on digital tools and apps.

The absence of good IT infrastructure in rural and remote areas because of NBN limitations places limitations on the use of telehealth.

It also limits consumer access to information and capacity to participate in consumer support groups.

Does the Grand Design work?

Consumers need HCHs to work for them.

Just as Grand Designs needs the commitment of its builders, in a high performing primary health care system engagement with individuals, their families and their communities is a high priority.

They need to be at the centre of the design and have the resources and support to play a leading role in building their Health Care Homes.