NACCHO Aboriginal Health and #MyHealthRecord : Report from the @AuDigitalHealth : Navigating digital health – where we’ve been 2018 , and where we’re going 2019 and beyond

 ” On 26 November 2018, the Australian Parliament passed the My Health Records Amendment (Strengthening Privacy) Bill 2018.

The measures allow Australians to opt in or opt out of having a My Health Record at any time during their life. Records will be created for every Australian who wants one after 31 January 2019. After this date, a person can delete their record permanently at any time.

These changes are in response to the Australian community’s calls for even stronger privacy and security protections for people using My Health Record.

These changes are summarised Part 2 below 

Part 1 Australian Digital Health Agency News

The best way to predict the future is to create it.

This special report shares some insights about what’s on the horizon for digital health in Australia.

The Agency is tasked with improving health outcomes for all Australians through the delivery of digital healthcare systems, and implementing Australia’s National Digital Health Strategy – Safe, Seamless, and Secure: evolving health and care to meet the needs of modern Australia. in collaboration with partners across the community.

The Agency is the System Operator of My Health Record, and provides leadership, coordination, and delivery of a collaborative and innovative approach to utilising technology to support and enhance a clinically safe and connected national health system.

These improvements will give individuals more control of their health and their health information, and support healthcare providers to deliver informed healthcare through access to current clinical and treatment information.

Further information: www.digitalhealth.gov.au

Where we’ve been…2018

2018 has been a watershed year for digital health in Australia. The transition of the My Health Record system to opt out, and the national conversation that ensued, has well and truly brought the topic of digital health into the public consciousness.

As we look ahead to next year, we project that over 90% of Australia’s population will have a My Health Record from February onwards. This will mean that health and care providers can implement safe and efficient digitally enabled clinical workflows on the safe assumption that most of their patients will have their own shared digital health record. The My Health Record system will become a focal element of Australia’s digital health infrastructure, as well as providing a platform for additional innovations into the future.

Other notable milestones from 2018 include the inaugural Global Digital Health Partnership Summit and Symposium in February, the secure messaging industry collaboration workshops in June and November, the official launch of the National Digital Health Strategy in July, and the release of the Digital Health Evidence Review in October. Many other projects are underway in various stages of development; we look forward to announcing their outcomes as they come to fruition.

We also celebrated our second birthday and took feedback from our team on how we should operate into the future, with a new structure and changes in our governance that we’ll implement shortly. We completed our second OCI staff survey and achieved over a 70% completion rate, and are currently analysing the results to help us become an even more effective organisation.

… And where we’re going 2019

The Agency’s work plan for the coming year builds upon the results of previous initiatives in multiple streams, adhering to the long term vision laid out in the National Digital Health Strategy.

As the foundations of Australia’s digital health ecosystem are put into place, it becomes possible to develop and implement new models of care that leverage the capabilities of these foundations. One of these projects is the Children’s Digital Health Collaborative, a joint venture between the Agency, eHealth NSW and the Sydney Children’s Hospitals Network. As Steve Badham reports in this issue of #Share, the Collaborative is now establishing pilot sitesin Western NSW and the Blacktown region of Sydney to connect with local families and discover their needs.

Interoperability between clinical systems is a theme that will gain prominence in the coming year. As Brad McCulloch explains in this issue, interoperability is never achieved in a single step. But like the proverbial journey of a thousand miles, that is where it begins.

Progress towards a national secure clinical messaging system is well underwaySari McKinnon reports. June’s industry workshop laid the foundations for further collaboration and agreement, and the recent follow-up workshop in November built upon this groundwork.

Implementing digital health is about more than just technologies, workflows and industry standards. Above all, it’s about people. In this issue Rodney Ecclestone tells us about the Agency’s Clinical Reference Leads, our cohort of clinical experts who help to ensure that our policies, programs and their outputs deliver maximum value to Australia’s clinicians and the patients they serve.

Read over 40 NACCHO Aboriginal Health and My Health Records articles HERE

Part 2 On 26 November 2018, the Australian Parliament passed the My Health Records Amendment (Strengthening Privacy) Bill 2018.

The measures allow Australians to opt in or opt out of having a My Health Record at any time during their life. Records will be created for every Australian who wants one after 31 January 2019. After this date, a person can delete their record permanently at any time.

These changes are in response to the Australian community’s calls for even stronger privacy and security protections for people using My Health Record.

These changes are summarised on this page.

Use of My Health Record information by employers and insurers

The Australian Digital Health Agency will not approve the release of an individual’s personal or health information to a third party except where it is related to the provision of healthcare or is otherwise authorised or required by law.

The new measures ensure that insurers and employers are prohibited from using information within your My Health Record, or asking you to disclose your information, for insurance or employment purposes.

The primary purpose of My Health Record is to improve your care, and the use of your information for insurance and employment purposes is not healthcare.

Access by law enforcement and government agencies

Under the Agency’s official operating policy, no information within My Health Record can be released without an order from a judicial officer. To date, the Agency has never received such a request and has never released information.

Under these measures, the Agency’s policy will be protected in law and will give Australians the assurance that no information can ever be released without oversight from a judicial officer.

Permanent deletion of a cancelled My Health Record

You will be able to permanently delete a My Health Record at any time, if you decide you would no longer like one.  No archived copy or back up will be kept and deleted information won’t be able to be recovered.

A My Health Record that was cancelled in the past (and archived) will also be permanently deleted. If you cancel a record at any time it will be permanently deleted.

Greater privacy for teenagers aged 14­ and over

Under these measures, once a teenager turns 14, parents will automatically be removed as authorised representatives.

Increased penalties for misuse of information

Harsher fines and penalties will apply for inappropriate or unauthorised use of information in a My Health Record. Civil fines will increase to a maximum of $315,000, with criminal penalties including up to 5 years’ jail time.

Strengthening protections for victims of domestic and family violence

There are currently safeguards in place to protect victims of domestic and family violence. Under the changes, the Agency will no longer be obliged to notify people of certain decisions if doing so would put another person at risk.

In addition, parents subject to a court order, where they do not have unsupervised access to their child, or who pose a risk to the life, health and safety of the child or another person will no longer be eligible to be an Authorised Representative.

We will continue to work and consult with relevant stakeholders to continually reduce misuse of the My Health Record system.

Government agencies involved in managing the My Health Record system

These changes clarify that our powers as the System Operator of My Health Record can’t be delegated to another entity (e.g. government agency or private organisation) with the exception of the Department of Health and the Chief Executive of Medicare.

We already delegate some of our powers to Medicare so they can efficiently deliver some services on our behalf. For example, Medicare currently:

  • Register healthcare providers organisations and other participants so they can access My Health Record
  • Verify individuals’ identity prior to opting out
  • Send written notifications to people when certain actions are taken, such as when people opt-in to My Health Record.

We have also delegated powers to the Department of Health to provide education on our behalf.

These changes will provide Australians with greater assurances that only government agencies involved in the efficient delivery of My Health Record are involved in managing the system.

Use of My Health Record data for research purposes

The My Health Record system is a valuable source of information on Australia’s health system and the outcomes of care being achieved. This information can guide service planning, policy development and research to further improve the Australian health system.

The principles contained within the Framework to guide the secondary uses of data will become law (within the My Health Record Rules). A Data Governance Board will be established to approve the release of any data in line with these rules.

Lastly, it will also be clarified that insurers cannot access data for any reason.

No commercial use of My Health Record data

The legislation makes clear that the My Health Record system cannot be privatised or used for commercial purposes. Only a government organisation will be able to manage the My Health Record system.

Part 3 International review puts Australia ahead in personal control of electronic health records

An international comparison review of digital health record systems shows My Health Record consumers in Australia have more ability to personally control their digital health information than in similar countries worldwide.

The Digital Health Evidence Review, released by the Australian Digital Health Agency, brings together studies comparing My Health Record with similar systems across the world, including those in France, the UK, the USA and New Zealand.

“We know through the important national conversation that is currently occurring that Australians expect and deserve strong safeguards, choice and control when it comes to their personal information,” says Agency Chief Medical Adviser, Professor Meredith Makeham.

“As the Agency responsible for My Health Record, we need to continue to improve the system in consultation with the Australian community and their healthcare providers.”

With the Australian My Health Record system, people have among the most choice in how their medical information, such as their tests and scans, are stored and accessed from an international perspective.

“Although many countries have laws that allow users to view their health information, only Australia and a handful of other countries have laws that allow citizens to control who sees their information and request corrections to their own health data,” says Makeham.

My Health Record is an online summary of a person’s key health information. It allows Australians to share their health information with doctors, hospitals and other healthcare providers from anywhere, at any time. They can control access to their My Health Record including what information gets uploaded and which family members, carers or healthcare providers have access.

Out of the 50 countries surveyed, the Digital Health Evidence Review found:

  • Only Australia and France allow individuals to edit or author parts of their record
  • Only 32 per cent of surveyed countries have legislation in place that allow individuals to request corrections to their data.
  • Only 28 per cent of surveyed countries have legislation that allows individuals to specify which healthcare providers can access their data.

“This review demonstrates the My Health Record empowers consumers to personally control their information, including what’s in it and who can see it,” says Professor Makeham.

Research Australia CEO Nadia Levin has welcomed the review.

“There is great value in sharing information about the My Health Record system and similar digital platforms around the world. This information can support researchers, policy makers and the community in understanding the way personal health records can support better health outcomes and health system improvements, while considering the necessary controls required to build trust in such a system” Ms Levin says.

University of Melbourne Professor of Primary Care Research and General Practitioner Jane Gunn says she supports the development and ongoing review of clinical evidence, as it will drive improvements in the digital health system.

“Sharing evidence about the way My Health Record and similar international personal health records are used will support clinicians in understanding the benefits of shared health data.

“As a practicing GP I can see how My Health Record has the potential to inform better care coordination for my patients, and save valuable time searching for information we need to make safe clinical decisions,” says Professor Gunn.

Professor Meredith Makeham says the Review deepens our understanding of the way shared health records are being developed and implemented in Australia and internationally.

“We need to understand the strength of the current evidence supporting the use of personal health records, and where we see gaps in the evidence base.

“This is important to guide future efforts, working with the research community and others to build our knowledge and inform future digital health service development and investment,” Professor Makeham said.

The Review drew on a variety of research sources, including academic peer-reviewed literature, government reports and white papers, World Health Organization (WHO) data, and other information sourced from international governments and agencies responsible for the delivery of digital health services.

More than six million Australians already have a My Health Record and 13,956 healthcare professional organisations are connected. This includes general practices, hospitals, pharmacies, diagnostic imaging and pathology practices.

More information on My Health Record can be found at www.myhealthrecord.gov.au. People who do not want a My Health Record can opt out by visiting the My Health Record website or calling 1800 723 471 for phone-based assistance. Additional support is available to Aboriginal and Torres Strait Islanders, people from non‐English speaking backgrounds, people with limited digital literacy and those living in rural or remote regions.

The Digital Health Evidence Review can be accessed at www.digitalhealth.gov.au/evidence-review.

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