Our Data, Our Health
When it comes to health system statistics in Australia there is a paradox. It is that the vast amount of data collected on individual interactions with the system is in inverse proportion to the limited public reporting of such activity, even in de-identified meta form.
There are voluminous records measuring our contact with health care – from our blood pressure to our sugar levels, from Medicare visits, PBS scripts dispensed, to procedures performed, hospital stays and emergency department presentations. They form a huge treasure chest that if securely aggregated would give deeper insight into what’s working and what’s not working in our health system.
Such a goal is particularly relevant to the most commonly used sphere of the Australian system – primary health care, such as visits to the GP.
Australia’s pre-eminent health statistics gatherer, the Australian Institute of Health and Welfare (AIHW), is working to bridge that gap in our health system knowledge.
AIHW is developing the National Primary Health Care Data Asset with the ultimate aim of providing detailed data yielding comprehensive reporting about the primary health care experience, the treatment journey, outcomes and costs – generating a knowledge bank to guide system-wide advances to benefit all health consumers.
AIHW has contracted CHF to gauge consumer knowledge, attitudes, support and concerns about the issues involved including patient consent and privacy. As a result, CHF is developing a communication program, Our Data, Our Health which includes two webinars on 30 October and 11 November.
CHF has strongly supported development of rigorous collection and use of de-identified health data because of the potentially significant benefits to health care that can flow from a more complete understanding and knowledge about primary care activities and outcomes.
This reflects a recent consumer sentiment poll by Research Australia that tells us the vast majority are willing to provide their de-identified personal information although the purposes for which they are willing to provide their information vary. There is strong support if it is to help advance medical research (78%), improve patient care (68%) and help public health officials better track diseases, disabilities and their causes (61%[i]).
But we know the importance of social licence. The success of the Data Asset depends very much on having the trust and confidence of consumers and the community. Its development should be open and transparent, with active engagement of consumers. It must balance protection of consumer privacy while supporting quality health care.
Issues such as protecting patient privacy and ensuring informed patient consent for the handling of personal information require consumers to be involved in the decision-making.
AIHW has a strong record in securing privacy of information, but given the Data Asset will be overseeing the collection and processing of patient information in the often intimate setting of primary care, consumers will need to be reassured on such aspects as security of information and safety of de-identified data.
AIHW recently produced a report, Developing a National Primary Health Care Data Asset: consultation report which conveys the wide variety of views about the nature and purpose of the Data Asset project, reflecting the great diversity in the work and workforce of primary health care.
That diversity of views makes it all the more important that the consumer perspective is clearly reflected in the final outcome of the Data Asset.
The range of activities in primary care means the scope to influence health care for the better is extensive. While we know through Medicare statistics about the number and cost of medical consultations, there is little or no system-wide information about what the patient is seeing the doctor for, what their experience was and what the outcomes were.
For instance, the treatment and outcomes of widespread chronic conditions like obesity and mental illness would benefit as a result of more detailed information about prevalence, risk factors and outcomes gleaned via the Data Asset.
At a systemic level, having reliable and comprehensive data about health services can improve the quality of care and lead to better outcomes – both clinical outcomes as well as experiences of care.. Information on health needs, number of services and costs help with service delivery planning for primary health care.
As a first stage, the Data Asset may be largely based on general practice activity and allied health practitioner data. The de-identified data may be used by Primary Health Networks to guide local health service priorities. Over time the Data Asset would extend to a broader range of primary health care providers, including but not limited to nurses, physiotherapists and psychologists and settings such as community health
By shining light on activity and outcomes in primary health care, the Data Asset opens the way for consumers to have more understanding and a greater say in service design and delivery.
To participate in the CHF webinars which will help AIHW further shape its thinking on the Data Asset Click Here