By the end of the year Australians will have an online digital health record, unless they opt out of the system. The details of the move towards opt-out will be released soon.
The Australian Digital Health Agency (ADHA) is ramping up its activities to prepare for the change to opt-out. The large-scale operation will involve extensive stakeholder engagement, a nation-wide communication and advertising campaign and increased support for consumers and clinicians.
For consumers who have not opted out at the end of the defined three-month period later this year, a My Health Record (myHR) will be created. The record will be activated when used for the first time by consumers or clinicians.
A clean slate
Staff levels of the call centre – transferred from the Department of Health to ADHA – will increase from thirty to two hundred and will operate around the clock during the opt-out period.
The record will initially be empty apart from two years worth of retrospective MBS and PBS data. Consumers have the option to remove this data.
Pathology and imaging reports are uploaded into the MyHR one week after the test date. Some sensitive tests, such as HIV, may not be automatically uploaded depending on the various State or Territory legislation.
Clinicians and consumers will have the opportunity to stop the upload of results and other reports if desired. Consumers can restrict access to or remove reports from their MyHR.
No stone left unturned
No stone has been left unturned in finding ways to make Australians aware of their right to opt out: a wide scale advertising campaign will use various media including radio, social media, billboards and cinemas.
Materials such as waiting room brochures, tear-off pamphlets and reception cards will be made available to providers. Medicare will be sending out brochures to Australians. Consumer organisations have been engaged to help with awareness.
It is expected that the adoption and active use of the MyHR will vary across Australia as a result of the availability of already existing digital health solutions in various states and regions.
For example, in areas where discharge summaries are not always easily made available by hospitals, the uptake of the MyHR may be higher.
Currently there are about twenty million Australians without a MyHR. Based on the trials it is expected that only a small percentage, about 2%, will opt-out.
It looks like the opt-out procedure will be relatively simple and can be done via an online self-service portal or by phone through the help desk. Hard copy opt-out and ‘election-to-not-be-registered’ forms will also be available through post-offices, and will be made available to hard-to-reach populations.
Although care has been taken to make sure there is no coercion not to opt-out, those who do will receive a notification that their medical information may not be accessible during emergencies. They will also be asked to give a reason after they have opted out.
The MyHR website will shortly contain information about the opt-out procedure. It is also expected that the FAQ section will be expanded to assist consumers in making a well-informed decision.
Risks and challenges
The MyHR offers clear benefits as clinicians will have increased access to information such as shared health summaries, discharge summaries, prescription and dispense records, pathology reports and diagnostic imaging reports.
However, every digital solution has its pros and cons. It has been decided that the risks associated with the MyHR will not be explicitly discussed on the website.
Behind the scenes however, risk mitigation has been one of the priorities of ADHA. This obviously includes the risk of cyber attacks and public confidence in the security of the data.
Another challenge for ADHA will be to manage expectations – before, during and after the opt-out period. The reality is that the MyHR is not a be-all and end-all, and is still on a development journey.
As a result of the troubled past of the digital record there is a large group of skeptics. It appears that so far ADHD nor the Department of Health have been able to get this group on board. The usual promotional material, touting benefits, is unlikely to change anything. A more effective approach would involve addressing the concerns, issues and perceived obstacles.
Primary Health Networks (PHNs) will assist in spreading the message. The PHNs involved in the opt-out trials reported high levels of success in engaging providers.
Other parties including the Royal Australian College of General Practitioners (RACGP) will provide peer-to-peer education, which may help to balance the message, address some of the concerns and manage expectations.
Edwin Kruys is a member of the My Health Record expansion program steering group.