The reality that illness is often unexpected or unplanned makes the immediate availability of health information vital. So the personal experience of an unwell Australian anxiously seeking long-delayed results of a COVID-19 test has injected a timely perspective into discussions about the National Health Information Strategy (NHIS). Equally so has been the nation’s pre-occupation with the daily trend data of number of cases, deaths, hospitalisations and tests as the pandemic unfolded across the globe and in our country.

Just as the pandemic was emerging in Australia, CHF partnered with the Australian Institute of Health and Welfare to present a webinar on the NHIS. The aim of the NHIS is to produce integrated, effective and timely health data and information. AIHW contracted CHF to provide consumer input into the development of the strategy.

What the webinar and previous consultations on the NHIS have made clear is a public appetite for better and more accessible information. Political caution about release of health system information is at odds with the view of many Australians who support release of de-identified health data, which may include their own, provided it is in the interests of public health.

However, the availability of health system information is often patchy and uncoordinated. It may be routinely collected but is often not released due to a variety of factors.These include the disjointed nature of state-federal health arrangements and institutional and professional reticence.

Among the consumers who provided input to CHF’s consultations was “Agnes” (not her real name) who described “the serious flaws with the connection and communication in our health system”.She was tested for COVID while aboard a cruise ship and spent a fortnight in self-isolation trying to get the result of the test. She contrasts that experience with the result of a subsequent test showing COVID “undetected” which was automatically uploaded to her eHealth record. She asked how NHIS would connect and coordinate services so critical information such as with pandemic infections is communicated to people at the speed it needs to be.

As a member of the Independent Expert Panel charged with providing advice on the NHIS, I have sought to focus on the importance of access to health data for consumers. At the webinar, I said consumer experience with the COVID pandemic highlighted the value of health data as people around the world sought the daily statistics on the pandemic and that it was important the NHIS draft plan gained consumer and public input.

Jenny Hargreaves, who heads AIHW’s Data Governance Group, told the webinar the goal of the consultation was to establish not only broad principles for the NHIS but also strategic goals for the next 15 years to build a health system that managed data availability in line with community expectation.

Health consumer advocate, Neville Millen, said while health professionals might understand and use health data, many consumers could be bamboozled about what data might mean and how to use such information.  He said ultimately consumers wanted to better understand their illness profile and how to use the health system to better their health and should be able to interrogate health data of significance to them.

Dr Norman Swan, who heads the ABC’s Coronacast program and advises the Independent Expert Panel of the NHIS, told the webinar that at present the right health data were not being made accessible at the right time, particularly for consumers who were perhaps the most important users. This seemed to be mainly due to data custodians having an attitude of being “data guardians” who protected rather than shared the data.

Consultations indicated a need to reframe data custodians as “data stewards” who could build ways to share data and encourage its use in trusted ways rather than denying access. There is strong consumer and community support for such a change in ethos.  At the same time, community trust and confidence in data governance and systems must be solidly assured. 

But this data project should not be just about health, Norman said. The health system is not just about health but is also about other factors influencing health such as employment, imprisonment, policing, social welfare and much more.

While there is widespread support for the concept of an NHIS and the need to improved use of health data in Australia, concerns do continue about what data would be integrated and in particular My Health Record.

Most agree on the principle of the benefits of health data, the value of data-informed policy and planning, data-driven health system and service improvement.  Most also support the merits of an initiative such as the NHIS to guide strategy and investments and to provide a road map for national health information needs over the longer-term.

We have the opportunity to design an NHIS that provides the impetus to reorient the national health information system to be more patient-centred; to equally serve the needs of patients and consumers as well as the needs of managers and funders.

What will remain a requirement is to ensure Australia derives the greatest potential benefits of effective collection and use of health data is the community’s trust. We can deepen that trust through open and transparent debates of the kind stimulated by the webinar.

Watch the webinar