Ms Leanne Wells, CEO of the Consumers Health Forum of Australia, says consumer engagement is fundamental to the delivery of high-value care and in addressing unwarranted healthcare variation.
‘Consumer insights and consumer-based research can help to inform better policies, programs and service design,’ she says.
‘And, involving consumers at the point of care, equipping them with skills, confidence and knowledge to be in partnership with care teams, helps to ensure that that they are provided with the best program of care for their circumstances.’
Health literacy lagging
Health literacy is critical to consumer engagement, Ms Wells says, but more work is needed to build health literacy levels in Australia.
She points to Australian Bureau of Statistics data reinforcing earlier findings that up to 60% of Australians appear to ‘lack the capacity to access, understand and appraise, and use crucial information about health-related conditions’.
‘Clearly, there is a spectrum of health literacy and, typically, people from lower socioeconomic groups are the ones with the more complex conditions who are in need of greater support,’ she says.
And, Ms Wells notes, it’s not just the access to and understanding of health information that requires literacy skills.
‘System literacy is also needed as support to navigate the system, the complex mix of services.’
Two recent reports – the Mitchell Institute’s Self-Care for Health: A National Policy Blueprint and the National Preventive Health Strategy draft (recently closed for consultation) – have also called for national programs to build health literacy.
Practical tools
Ms Wells says consumers should feel confident to ask questions of healthcare providers to ensure that high-cost, high-intervention services are not the ‘first order’, and that all options are considered.
‘Often, that is not the common experience,’ she says.
To build patient confidence, initiatives such as Choosing Wisely’s ‘Five questions’, and the ‘QuestionBuilder’ jointly developed by healthdirect and the Commission, are excellent, practical programs to support patients in seeking out high-value care, Ms Wells says.
‘These practical [tools] can help to reduce unnecessary tests and procedures and prevent consumers feeling like they are on that [medical] merry-go-round,’ she says.
Ms Wells says some progressive general practices and primary health networks across Australia are also embracing the ‘patient activation measure’ as a ‘powerful’ tool to gauge the levels of consumer engagement with their health care and to flag when more support is needed.
Ms Wells noted, however, that Australia has more work to do in embedding shared decision-making in clinical practice, pointing to the presentations by the University of Sydney’s Professor Lyndal Trevena showing that Australia lagged behind many nations in terms of advanced shared decision-making.
Consumer voice key
The Australian Commission on Safety and Quality in Health Care CEO Professor Debora Picone says well-informed consumers may be the key in tackling some entrenched areas of unwarranted variation, including antipsychotic prescribing in aged care and planned births before 39 weeks without a medical reason.
‘If you actually sat down with the family and explained to them an antipsychotic prescription may make their parent worse (it may cause ataxia, that their parent would spend a lot more time sleeping and being sedated, that they were more likely to have falls, and it would certainly shorten their life), then the average person would likely never consent to use of the antipsychotic,’ Professor Picone says.
Also, she says, if parents knew the risks to child development associated with planned births before 39 weeks, they would not consent unless medically indicated. The Every Week Counts campaign is seeking to raise awareness about these risks and the Fourth Australian Atlas of Healthcare Variation analyses planned births before 39 weeks without a medical reason.
Ms Wells agrees that these are ‘standout areas’ in which the consumer voice can help to address unwarranted healthcare variation.
‘Both areas are symptomatic of systems of care – be it aged care or maternal care – being organised around provider-centric interests and imperatives rather than what’s in the best interests of the patient,’ she says, adding that consumer engagement could also play a role in addressing high rates of variation in hospitalisation for heart failure and chronic respiratory disease.
Mandatory partnerships
Ms Wells says that the Commission’s Partnering with Consumers Standard sends a powerful signal of the importance of engaging with consumers.
‘The dial is moving in the right direction at all levels across the system, although there is still a lot of tokenism,’ she says.
‘It’s not so much that governments, hospital administrators and primary health networks don’t get the importance of consumer and community engagement; I think they absolutely do,’ she says.
‘It’s more about implementation, and supporting organisations – be they government departments, research organisations, or health service providers – to be more engagement-capable.’