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Australian Department of Health conducting public consultation on secondary use of My Health Record data

The Australian Department of Health has initiated a public consultation for the development of a framework for the secondary use of My Health Record (MyHR) systems data in Australia. The Public Consultation Paper (Word and pdf) was released on October 5, 2017. The Framework will build upon existing privacy laws to enable secondary use of health data for the public good and the use of data solely for commercial and non-health related purposes is considered out of scope.

The My Health Record system allows Australians to share important health information (such as medical conditions, treatments, allergies, and details about medicines) securely online with registered healthcare providers – from anywhere, at any time. It can include information from Medicare (like the last time for doctor visit), prescription data on medicines and test results (like blood tests or x-ray reports). It can also hold other documents uploaded by the GP (like letters to specialists) and hospitals can upload discharge summaries and follow-up care information.

In its 2017-18 budget, the Australian government announced plans for a national roll-out of an opt-out model of My Health Record over a period of two years and allocated AU$374.2 million for the implementation. There is a 2017-18 target for all States and territories, two private diagnostic imaging providers and two private pathology providers to share diagnostic imaging and pathology reports with the My Health Record. 

Currently, over 5 million Australians have a My Health Record. Most doctors and hospitals in Australia are connected to the My Health Record system, which currently holds over 3 million clinical records and 12 million prescription and dispense documents. The consultation paper notes that as the volume of information in My Health Record grows and more Australians get a My Health Record, it may become one of Australia’s most comprehensive health data resources.

‘Secondary use of data’ is when information is used for a purpose other than that for which it was originally collected. The primary purpose of My Health Record is to assist doctors and healthcare providers with their clinical decision-making – through information sharing. Everyone can work together in one secure digital environment to better coordinate care, in situations like medical emergencies.

In this context, secondary use would be to use the information in the My Health Record system for purposes other than the provision of direct healthcare to the individual person, which is considered to be the primary use.

Many existing public and government health datasets are being used for secondary purposes. But data in the My Health Record system is not currently used for research, policy and planning purposes, although legislation is in place to enable it. Under the My Health Records Act 2012, one of the functions of the Australian Digital Health Agency as the system operator for the My Health Record is “to prepare and provide de-identified data for research and public health purposes.”

In addition, the legislation states that health information in the My Health Record system may be collected, used and disclosed “for any purpose” with the consent of the healthcare recipient. The Privacy Act 1988 also applies to the My Health Record in respect of consumers’ health information. For example, the Australian Privacy Principles Guidelines explicitly states that in order for a person to give consent for anything, the person must be adequately informed beforehand, the person must give it voluntarily, the person’s consent must be current and specific, and the person must have the capacity to understand and communicate it.

The secondary use of My Health Record data is expected to provide important insights into the effectiveness and safety of medical treatments and clinical care across Australia’s health system.

The paper provides several examples of how this might happen. For instance,  pioneering work in Western Australia in 1989 used data linkage to establish that the inclusion of folic acid in expectant mothers’ diets prevents neural tube defects in their babies. As a result of this discovery, in 2007 federal and state governments agreed to introduce the compulsory enrichment of bread-making flour with folate. Since this measure was introduced there has been a 14.4% overall decrease in the rate of neural tube defects in Australia.

Secondary use of My Health Record data could also occur when new treatments, like new drugs, are offered to Australians for diseases like diabetes or cancer. Identifiable information in My Health Record may be securely linked to quickly locate people who may want to be part of clinical trials. Researchers involved in clinical trials may also request permission to link My Health Record data to other databases to help investigations into subsequent hospitalisations, diseases and death.

But before My Health Record data can be used for secondary purposes, a Framework is required that incorporates existing rules. It is envisaged that the Framework will address overlap between commercial and health related uses of data. For example, use of data for development of pharmaceuticals could be considered both a health related and commercial purpose.

HealthConsult has been engaged to assist the Australian Government in developing the framework. HealthConsult’s project team draws on pre-existing relationships with Health Policy Analysis (HPA) and Health Outcomes International (HOI).

There are 11 workshops scheduled across the country.  Live webinars are planned for October 12 and 16. Written submissions can be sent till Friday 17th November, 2017. An online survey is also available here for providing semi-structured input against the questions in the Public Consultation Paper. A one-to-one interview can be requested for those wishing to provide input on a more confidential basis. One-on-one interviews can be held in-person at times when the project team is on location for the workshops, or by telephone.

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