My Health Record: Connecting Australians with their own health information

Abstract

The expansion of My Health Record marks an important change in Australia’s healthcare system. In February 2019, a My Health Record was created for people, unless they chose not to have one. This opt-out participation model resulted in a large number of Australians now having access to My Health Record, with approximately 90.1% of those eligible for Medicare participating in the system at the time of record creation. While a national electronic summary record has been available since July 2012, the move to an opt-out system with the ongoing option to permanently delete their record at any time offers Australians an important choice about how they wish to interact with their personal health information. There has been a global move to digitise health systems and data over recent years to improve the way clinicians access accurate health information at the point of care. This is hardly surprising given the critical importance of access to high-quality data in delivering safer care and better health outcomes for our patients. Some countries around the world are now developing digital services that allow people to access their own health information. The growth of these “personal health record” systems (Tang et al., 2006) – like Australia’s My Health Record – represent an important change for people, empowering them to play a more active and informed role in managing their health in partnership with their healthcare providers. The My Health Record system is a secure online record, accessible to and controlled by the healthcare consumer, containing summary information from their registered and connected healthcare providers. The information includes shared health summaries from general practice containing medicines, allergies and diagnoses; hospital discharge summaries; pharmacy dispense records; event summaries and documents from specialists and allied healthcare providers; and pathology and diagnostic imaging reports. In addition, people can view their records within the Australian Immunisation Register and Australian Organ Donor registry, access Medicare and Pharmaceutical Benefits Scheme billing information and upload their own Advance Care Plans. Healthcare providers who are securely connected to the system and directly providing care to the My Health Record recipient are allowed to view and upload information to the record for their patients. This is a model that overcomes some of the traditional communication barriers that prevent a healthcare provider – and individuals – from accessing information contained within health system siloes. This could also be life-saving in an emergency situation where information about key diagnoses, medicines and allergies may be critical. Empowering people with access to their own health information and reducing risk in an emergency through My Health Record are important benefits to acknowledge. However, there are many other benefits associated with personal health records that have been demonstrated in a variety of clinical settings around the world (Bell et al., 2017; Canada Health Infoway, 2018; Nohr et al., 2016, 2017). These include an improved understanding and compliance with medication regimens, which plays an important role in both safety and better health outcomes for people (Delbanco et al., 2012). Other likely benefits include better coordinated care as clinicians can more easily share information with each other and their patients; time efficiencies for healthcare providers who will have an immediate view of previously unknown or difficult to access health information for their patients; and economic benefits and other efficiencies for the health system, such as a reduction in unnecessarily duplicated investigations when a healthcare provider sees it has already been performed. There is also a wealth of international evidence that the absence of systems that support the sharing of clinical information results in serious safety threats and avoidable harm to patients, as well as large system inefficiencies. It has been estimated that over 20% of adverse drug events in Australian primary care are preventable (Miller et al., 2006). In Australia every year, approximately 230, 000 people are admitted to hospital as a result of