Weeks before the anticipated announcement of the My Health Record opt out period, an insider’s leak has claimed the Australian Digital Health Agency has decided associated risks for consumers “will not be explicitly discussed on the website”.
As the ADHA heads towards the imminent announcement of the three-month window in which Australians will be able to opt out of My Health Record before being signed up to the online health information repository, the agency was caught by surprise today when details emerged in a blog post by GP and member of the steering group for the national expansion of MHR, Dr Edwin Kruys.
Kruys wrote that MHR offers “clear benefits” to healthcare through providing clinicians with greater access to discharge summaries, pathology and diagnostic reports, prescription records and more, but said “every digital solution has its pros and cons” and behind-the-scenes risk mitigation has been one of the priorities of the ADHA. However, he claimed Australians may not be made aware of the risks involved in allowing their private medical information to be shared via the Federal Government’s system.
“It has been decided that the risks associated with the MyHR will not be explicitly discussed on the website,” Kruys wrote.
“This obviously includes the risk of cyber attacks and public confidence in the security of the data.”
The most contentious contribution in the post related to the secondary use of Australians’ health information, the framework of which has yet to be announced by Health Minister Greg Hunt.
Contacted by HITNA, the agency moved swiftly to have Kruys delete the paragraph relating to secondary use.
In the comment that has since been removed, Kruys wrote, “Many consumers and clinicians regard secondary use of the MyHR data as a risk. The MyHR will contain a ‘toggle’, giving consumers the option to switch secondary use of their own data on or off.”
Under the My Health Records Act 2012, health information in MHR may be collected, used and disclosed “for any purpose” with the consent of the healthcare recipient. One of the functions of the system operator is “to prepare and provide de-identified data for research and public health purposes”.
Before these provisions of the act will be implemented, a framework for secondary use of MHR systems data must be established.
HealthConsult was engaged to assist the Federal Government in developing a draft framework and implementation plan for the process and within its public consultation process in 2017 received supportive submissions from the Australasian College of Health Informatics, the Australian Bureau of Statistics and numerous research institutes, universities, and clinicians’ groups.
Rare Cancers Australia said in its submission that the secondary use of data could lead to advances in medical research into the diseases.
“RCA recognises that secondary use of My Health Record data may be concerning for some individuals and patient groups, but that where assurances can be made for those privacy concerns to be met, the substantial benefit that may be gained for the whole population is significant,” the RCA’s submission stated.
“The opportunities to enhance data collection for regulatory decision making for rare cancers (and other rare diseases) through the nationally consistent My Health Record are manifold and we strongly support the exploration of how that may be achieved through this consultation.”
Multiple Sclerosis Australia said it was “very excited” about MHR and the outcomes and possibilities it could provide to the community.
“The opportunities for data linkages will be significant for the MS community and this may involve the re-identification of data,” the MSA submission said.
“To ensure the effective linkage of data collected from the My Health Record system to large scale international and national databases such as MSBase and the AMSLS, and to maximise the potential for collaborative research, MS Australia is keen to see that the data is made available to Australian and international researchers and for there to be robust governance arrangements in place to ensure research is overseen by appropriate independent ethics committees and individual patient information is appropriately protected.”
But other organisations, including the Law Council of Australia, urged caution.
“The Law Council does not consider that the policy decision to adopt an opt out model for creation of My Health Record supports a further decision to adopt an opt out model for secondary uses of My Health Record (i.e. health, clinical and medical research). Rather, the Law Council recommends that the opposite should be the case: that is, that the default creation of a My Health Record for an individual should lead to policy caution in adopting a default consent for secondary uses of that individual’s My Health Record. Measures should be adopted in the framework to require ‘opt in’ for the use of personal data for secondary purposes to ensure that any use of personal data is by consent, as required by the legislation.”
Australians will be given a three-month period – to be announced by the minister soon – in which to opt out of having a MHR created for them.
The ADHA has already embarked on a large-scale awareness-raising effort involving stakeholder engagement, a nationwide communication and advertising campaign, a new call centre, a well-stocked website and a new Twitter account.
According to Kruys, the call centre – which has been transferred from the Department of Health to the ADHA – will increase staffing levels from 40 to 200 and operate around the clock during the opt out period.
Each MHR will initially contain two years’ worth of retrospective MBS and PBS data, which consumers can remove.
Pathology and imaging reports will be uploaded into an individual’s MHR one week after the date of tests, to provide clinicians with the opportunity to explain results to patients. Some sensitive tests, such as those for HIV, may not be automatically uploaded depending on applicable state or territory legislation.
Clinicians and consumers can stop the uploading of results, while consumers can remove or restrict access to reports in their MHR at any time.
“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,” Kruys wrote.
“For example, in areas where discharge summaries are not always easily made available by hospitals, the uptake of the MyHR may be higher.”
More than 5.75 million Australians have signed up and currently have a MHR, and over 11,200 health professionals are connected. About 5.5 million “clinical” documents have been uploaded, although a portion of that is MBS and PBS data.
Based on the 2016 opt out trials held by the ADHA in Nepean Blue Mountains and North Queensland, it is estimated that about 2 per cent of Australians will choose to opt out.
“It looks like 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,” Kruys wrote.
“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.”
He also wrote that a challenge for the ADHA will be to management expectations.
“The reality is that the MyHR is not a be-all and end-all, and is still on a development journey.”
But as far as critics of the MHR system go, Kruys said a new approach could be more effective in winning them over.
“As a result of the troubled past of the digital record there is a large group of skeptics. It appears that so far [neither the] ADHA 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 and the RACGP are earmarked to assist in spreading the message to “help to balance the message, address some of the concerns and manage expectations”.
The looming MHR announcements come at a time when consumers are taking greater interest in privacy matters following the recent Facebook and Cambridge Analytica scandal.
Meanwhile, the Federal Department of Human Services child support system suffered a four-day tech meltdown at Easter caused by its troubled transition from a post-end-of-life Cuba system to a Pluto platform.