How care.data’s failure helped transform Australian healthcare

But it could be better: as many as 250,000 avoidable hospital admissions are reported to occur each year because of medication misadventure; up to 18 per cent of diagnostic tests may be duplicated; it has serious issues with equity of access for those living in remote and rural Australia, particularly among indigenous people whose lifespan is, on average, eight years lower than residents of the more prosperous suburbs on the Eastern seaboard.

I have travelled across this continent on many occasions and the distances are still eye-watering – it can take five hours to fly from Perth to Sydney, longer than from London to Moscow. It is difficult to imagine a better case for the use of basic digital services, like video consultation, to empower people in remote country to speak to a doctor or a nurse quickly and conveniently – but adoption of telehealth has been slow.

For these reasons, the Australian government decided four years ago to put data and technology to work to solve some of these problems and bring an end to the dangerous dependence of Australian medicine on paper and the fax machine.

In 2016, the Australian Digital Health Agency (ADHA) was established to design and implement a new national digital health strategy and I was appointed its inaugural chief executive.

In 2017 that strategy was agreed. At its centre is a set of simple principles: that all clinical information should be shared securely, in real time and with standards that enable common meaning; and that a person should, if they wish, have online access to their key health information and the right to control who else sees it.

The immediate priority was to make people safer: to ensure that key health information, including allergies, medication history, hospital discharge summaries and summary data from general practice is available to all authorised clinicians at point of care, when a person permits it. In 2017, it was announced that My Health Record, the existing online summary health information service, would be expanded to all Australians, unless they chose to opt out.

An individual can remove any information in their My Health Record from the view of one or more of their authorised clinicians. For example, they might choose not to let their physiotherapist access information about their mental health. They also can see who has viewed the record and can subscribe to an SMS or email service that will alert them when it is accessed by a clinician. An individual can also decide to delete their entire record permanently or to allow another person, perhaps their carer, to control it for them.

There was media controversy about the move to opt out amid concerns about the privacy and security of digital health records. The Federal government responded by strengthening the privacy controls even further and to make it illegal for law enforcement agencies to access the record without a court order – a higher standard than for other medical record systems in the country.

Last February the opt out period ended. Just under 10 per cent of the 25m people resident in Australia had chosen to opt out. As people interact with health services, or access it online themselves, My Health Record starts to fill with content. Most healthcare providers are now connected and uploading content, including pharmacies, GPs, hospitals, pathologists and radiologists.

Recently the Australian Auditor General published a review of the My Health Record programme and concluded that implementation was ‘largely effective’. It called out broader concerns about secure management of clinical information by healthcare providers and the ADHA is now working with partners to develop new approaches to standards and compliance.

Lessons from care.data

Inevitably, the implementation of the My Health Record opt out was influenced by my experience with care.data when I was a National Director at NHS England.

They are very different propositions (My Health Record’s primary purpose is to provide information at point of care; care.data was intended to enable access to de-identified data for analytic purposes). However, there were important lessons to be learned.

One common thread was the need to properly address people’s concerns about the privacy and security of their most confidential clinical information and to ensure they could make an informed decision about the right to opt out – and that it was easy for them to do so.

In the run up to – and during – the opt out period in Australia, there was a major communications campaign. This covered TV and social media, as wells thousands of local events and special programmes for minority and indigenous communities.

A national call centre allowed people to ask questions or opt out. The was also a simple tool if people wanted to opt out online.

The important media debate, which robustly tested the potential benefits of the initiative and investigated the potential risks, also supported widespread public awareness. The ADHA commissioned communication tracking which showed that every Australian had on average 38 opportunities to see or hear about My Health Record within the opt-out period. All general practices and pharmacies received training.

Another key lesson from care.data was to ensure that a robust statutory framework existed for potential future secondary uses of My Health Record (even though none is currently permitted). In Australia, this was legislated for before the start of the opt out period. It rules out any future uses of de-identified data for any solely commercial purpose, for example, and guarantees that people have the ability to withdraw their consent for secondary uses at any time using a simple consent button on their My Health Record.

The absence of absolutely clear statutory rules for the uses of care.data was one of the reasons that the programme had to be stopped (the law was subsequently amended to clarify permitted uses). Information sharing initiatives in health care, however beneficial, risk the loss of social licence without such statutory frameworks in place.

Will My Health Record realise the benefits anticipated? Will it reduce medication errors because clinicians have access to a person’s recent history, cut avoidable hospital admissions, minimise diagnostic testing, and/or improve patient self-management? Early data is encouraging – the majority of clinicians in one study reported at least one incident of improved clinical decision making after use of My Health Record and the Medical Journal of Australia has highlighted a number of positive case studies.

More time is needed to judge the full impact of My Health Record, but I believe the national strategy of which it is a part represents a significant step forward in the digital maturity of Australian health care and can offer valuable lessons for other countries with the same ambition.

Tim Kelsey was CEO of the Australian Digital Health Agency until January 2020. He is now senior vice president at HIMSS, an international not for profit organisation which promotes digital maturity in healthcare. Before he left for Australia, he was National Director for Patients and Information in NHS England.