One of the contributions that social media has made to health care is the voice it has given to individual consumers, enabling them to speak about their experience of  illness/disability and their interactions with services and health care providers. People’s stories can highlight the problems with our health system (and often suggest the solutions) with a power and immediacy that no amount of theoretical discourse can achieve.  

One stand-out example is the blog of Carly Findlay, a young woman with a serious skin condition who writes about her experiences (both good and bad) of interacting with the health system and analyses how different models of disability inform the way in which health care providers treat people with a disability.  Another recent take on how consumer experience is relevant to all aspects of health and medicine is the response of Tina Tidmore to the Institute of Medicine’s proposed name change for Chronic Fatigue Syndrome (to systemic exertion intolerance disease). 

However, to effectively harness the collective experiences and knowledge of health consumers and to use these to inform future health care policies and programs, we need a systematic and effective measuring tool. Without this we will never be able to assess whether health care changes have made a difference where it most matters, i.e. to the health and well-being of consumers.

In its recent Budget Submission 2015/16 peak consumer body Consumers Health Forum of Australia outlines why the development and implementation of a tool to measure consumers’ experience of health care is vital for the future of health reform in Australia. The following is an extract from the submission which, in addition to this, covers a range of consumer health issues and contains a number of other important recommendations: 

The goal of all health reform must be to improve the health and wellbeing of consumers. The challenge, however, is that we do not currently have any way of measuring whether health reforms are making a difference to the Australian community, because we have very limited nationally consistent measures of consumer experience of the health system.

There has been some progress in relation to our ability to measure the performance of the healthcare system in Australia. Work the National Health Performance Authority has done clearly demonstrates the power of being able to measure population health outcomes at the local level, and provided capacity to measure the performance of particular areas (to the level of a Medicare Local region) against like areas.

CHF argues however that current measures of healthcare performance and quality are insufficient to provide an accurate picture of health system performance and form a basis for improvement and service planning.

We argue that this is particularly the case in relation to primary health care, where very few nationally consistent measures of health system performance are available. Further, there are almost no nationally consistent measures of consumer experiences of their healthcare, in both the acute and primary care sectors. If we do not measure the consumer experience of healthcare, we will not know whether health reforms are actually making a difference to consumers.

The National Safety and Quality Health Service Standards recognise the essential role that consumers play in improving health and safety.  As part of this it recognises the significant contribution that consumer partnerships can develop in service measurement and evaluation however, this is yet to translate into common practice in health system evaluation.

Current national measures of the consumer experience are limited to a handful of questions in the Australian Bureau of Statistics Patient Experience Survey. Some states and territories have their own measures of consumer experience, and many individual services have excellent models for measurement of consumer experience, but these do not give us the national picture that is needed.

Because Australia does not collect consumer experience data nationally, we do not have the answers to some fundamental questions about our health system. As the AIHW noted in Australia’s Health 2012:

There is no nationally coordinated approach to primary health-care data collection, which means there is little information available to answer fundamental questions such as ‘Why do people consult a health professional?’ and ‘What was the outcome from the consultation?’

Effective models are already in place internationally to measure consumer experience and drive performance improvements. The Euro Health Consumer Index provides one model that could be considered. This covers 42 consumer-related healthcare performance indicators for 34 countries, including broad questions around access as well as more specific measures such as involvement of patient organisations in decision making, consumer access to their own medical records and communication of test results directly to consumers. Canada has also recently started using the index. Another effective models include is the UK Department of Health’s National Cancer Patient Experience Survey.

It is time for Australia to start to measure what matters – the experiences of the consumers who use, and ultimately pay for, the Australian health system. Without this data, we will not know whether health reforms are actually resulting in better outcomes for consumers, and we will not know where the system needs to improve.

Recommendation 9:

The Federal Government should fund the development and implementation of consumer experience measures in the Australian health system. The Australian Commission for Safety and Quality in Healthcare should develop a national framework and tools to support meaningful and evidence based consumer experience evaluation measures as part of the accreditation of processes for all Australian health services.


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