The Framework defines how data on the My Health Record system can be used for research and public health purposes while preserving privacy and security of data in the system.
The My Health
Record system provides online summaries of patients’ health information
which can be accessed at any time by the patients and their healthcare
providers, with the objective of delivering better health outcomes for patients.
The online summary includes important health information,
such as allergies, medication the patient is currently prescribed to, his/her
diagnosed medical conditions, and pathology test results like blood tests.
As more people and their healthcare providers use the
My Health Record system, Australia’s national health system will become better
connected. This will result in faster and more efficient care for
you and your family. By the end of 2018, a My Health Record will be created for
every Australian, unless they choose not
to have one.
To inform how My Health Record data can be used and protected for
public health and research purposes, the Australian Government recently
developed a framework in consultation with consumers, clinicians, medical
researchers, industry experts, privacy advocates and the Office of the Australian Information
The Framework defines how data on the My Health Record
system can be used for research and public health purposes while preserving
privacy and security of data in the system. It outlines key principles that will be used to establish the
governance mechanisms and implement transparent processes that are needed to
guide decisions about releasing data to suitable applicants for secondary use
The key principles include:
The Australian Institute
of Health and Welfare (AIHW) will be appointed as the organisation to
manage and release datasets for the My Health Record Secondary Use of Data
Governance Board. The My Health Record Secondary Use of Data Governance Board
will be responsible for, and release regular statements about, data
availability and quality.
Individual consumers who have a My Health Record will be
able to opt-out of the use of their My Health record system data for secondary
purposes. In this way, consumers can have a My Health Record but elect for
their data not to be used for research and public health purposes.
Data cannot be used for commercial and non-health-related
purposes, including direct marketing to consumers, insurance assessments, and
eligibility for welfare benefits. Insurance companies will not be able to
access the data.
Data will not immediately flow from My Health Record; the
AIHW Ethics Committee will first consult with stakeholders on planned ethics
and approvals processes to ensure protection of individuals privacy.
The framework is to be reviewed two years after the first
dataset is released. It is also expected the first release of secondary use
data will not occur until at least 2020.
The Framework deliberately takes a cautious approach to the
secondary use of MHR data. The aim is to build public trust in the process
through transparent decision making and wide sharing of the results of the
secondary use of MHR data, including identifying the realised benefits.
According to the press
statement by Minister for Health Mr Greg Hunt MP, the My Health Record
system will help save and protect lives and is supported by healthcare
consumers, doctors and the medical community across Australia. It is subject to
some of the strongest legislation in the world to prevent unauthorised
use. He also emphasised that the protection of patient information and
privacy is critical and there are strong safeguards in place to protect health
data in Australia.
The Government said it will continue to work with the Australian Medical Association, the Royal College of General Practitioners,
Consumer Health Forum and other stakeholders
to deliver improved health outcomes for all Australians.
The full document of the Framework can be found here.
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