Position statement, 30 July 2018 – The Australian government, through the Australian Digital Health Agency, is in the process of providing all Australians (except those who choose to opt out) with a My Health Record: an online summary of an individual’s key health information. Already, 6 million Australians have a My Health Record.
During the opt-out period, there has been considerable public debate about the pros and cons of My Health Record. Debate has understandably focused on legitimate and important concerns about the security and privacy of an individual’s health information.
As the debate has intensified, we are concerned that there has been little opportunity to explore the considerable advantages of My Health Record for Australians.
We consider that My Health Record is an important step forward for healthcare and medical research in Australia – because (i) it has the potential to substantially improve patient care; (ii) it empowers Australians to manage their own health information; and (iii) it opens up the possibility that, with informed consent, an individual’s health information could directly contribute to medical research.
We note that it is crucial that My Health Record provides and maintains the very highest levels of security. In this new environment of centralised storage of health records, the security and privacy of an individual’s health information must remain paramount.
(i) There is little doubt that Australia’s current fragmentation of health records – across multiple clinics, practices and hospitals – is a real obstacle to optimal healthcare. In practice, each time a doctor sees a patient, she needs to pull together data from multiple sources to ‘put Humpty together again’ and make informed choices about the best possible care.
This fragmentation of health records will also become increasingly problematic with medical subspecialisation, and with the emergence of evidence-based precision health – in which an individual’s health records (and particularly their genomic information, if they choose) will be analysed in combination by multiple doctors so as to bring the right treatment to the right individual at the right time. Without an integrated, common-source health record, a precision health approach is essentially impossible.
(ii) Currently, Australians have little or no control over their own medical history. A properly working My Health Record should empower individuals to become the owners of their own health information – to share in whole or in part, with whom they see fit, or to keep private; and to analyse and re-analyse as new information becomes available.
(iii) As well as empowering individuals, My Health Record has the potential to provide an enormous boost to medical research, helping institutes like Garvan to better understand the major diseases affecting society, and to work towards more effective treatments, faster.
Medical research is undergoing a transformation to become a data-driven discipline. DNA sequencing has become cheaper and faster, computing power has skyrocketed and bioinformatic analysis of genomic information has become rapidly more sophisticated. This means that it is now possible to derive important clinical insights from the analysis of large numbers of genome sequences and associated clinical information.
At Garvan, we have ample evidence of how genomics can lead to better, individualised treatment of disease. Through programs such as the Australian Genomic Cancer Medicine Program and the Clinical Immunogenomics Research Consortium Australia (CIRCA), we are using genomic information to guide treatment approaches for individuals, often with astounding effect. We also conduct large cohort studies such as the Medical Genome Reference Bank, in which thousands of genomes are analysed side-by-side, yielding rich insights into the DNA changes that may drive disease.
My Health Record will provide the important opportunity for Australians to share their health information, including their genomic information if they see fit, for research purposes – on their own terms, and to the extent that they feel comfortable, if at all.
For the many thousands of Australians affected by disease, medical research is their best and brightest hope of a healthy future. For this reason, we think it is likely that many Australians may choose to contribute to medical research in this way, to impact the healthcare of their children and grandchildren if not necessarily themselves. However, even if this opportunity is taken up by only a small fraction of Australians, it is set to transform medical research in this country.
Professor Chris Goodnow FAA FRS
Executive Director
Garvan Institute of Medical Research
Professor David Thomas
Head, The Kinghorn Cancer Centre
Head, Cancer Division, Garvan Institute