My Health Record: the resuscitation of e-health, or a data placebo?
Like a phoenix rising from its ashes (or perhaps a resuscitation scene from ER) the Personally Controlled Electronic Health Record (PCEHR) digital health system has been given new life under the new My Health Record platform (MyHR).
Launched in July 2012 as one of the foundations of the National e-Health Strategy, PCEHR failed to make a significant impact on digital health due to poor uptake by both consumers and the medical professions.
In November 2013, the Australian Government commissioned a review of PCEHR by a panel of health and IT experts, which was completed in the record time of 6 weeks and released in May 2014 (PCEHR Review). Deloitte was then engaged to run the public consultation process, with their report being released in September 2014 (Deloitte Report).
In response to the PCEHR Review and the Deloitte Report, the Government announced a $A485 million “rescue” package to “re-boot” the failed PCEHR. The cash injection would be used to trial an opt-out system, improve the user-friendliness and clinical utility of the platform, including to relaunch the platform under the new name of MyHealth Record, and to replace the responsible agency, the National E-Health Transition Authority, with the Australian Commission for e-Health (since changed to the Australian Digital Health Agency, or ADHA). The project has cost nearly $A1 billion to date and is expected to cost at least another $A500 million.
My Health Record is intended to provide a secure online summary of a patient’s health information. It aims to facilitate improved medications management and care coordination, particularly for those in frequent contact with the health system. The patient has full autonomy over what goes into their MyHR portal. They also decide who is allowed to access their records.
One of MyHR’s stated benefits is that a patient’s important healthcare information will be available in one place online, easily accessible by authorised persons. This should result in better care in medical emergencies, and more generally by facilitating the dissemination of up-to-date information across the patient’s contact points within the healthcare network. It also dispenses with the requirement for patients to remember their own medical history in great detail. It could mark the end of filling out lengthy forms in the waiting room.
The Government estimates that a fully functioning MyHR will save it $A7 billion in direct costs and $A2.5 billion a year on an ongoing basis.
Terminal failure of the PCEHR
PCEHR was launched in July 2012 as one of the pillars of the National E-Health Strategy developed by Deloitte in 2008. The aim of the PCEHR system was to contribute to the creation of a “platform for health information exchange across geographic and health sector boundaries.”
Despite being met with initial warmth by consumers, PCEHR failed. PCEHR was not being used by healthcare providers, leading to a drop off in demand, with registration plateauing at 2 million users. The medical profession all but abandoned PCEHR, claiming it was too hard to use in daily practice. Only 40,000 health records were ever uploaded to PCEHR, accounting for only 2% of registered users.
Accordingly, the PCEHR Review was commissioned by the then Minister for Health, Peter Dutton. The PCEHR Review looked at the failings of PCEHR and sought to determine whether there was still a place for an e-health record system.
The PCEHR Review highlighted the following issues with PCEHR:
- not enough patients registered to provide clinical value;
- not enough information in patient records to provide clinical value;
- poor integration with healthcare practices; and
- the PCEHR interface was not conducive to practical clinical use.
However, the PCEHR Review found that there was still a place for an e-health system and that it remains a critical part of Australia’s future healthcare infrastructure. The PCEHR Review also suggested that fixing PCEHR’s flaws would help realise its benefits for the healthcare industry.
Following the PCEHR Review, the Government commissioned the Deloitte Report which indicated strong consumer support for an e-health record system. PCEHR was rebranded as MyHR and injected with more capital.
Will I be automatically registered for MyHR?
One of the reasons PCEHR failed was that it was designed as an opt-in system, with voluntary registration. The PCEHR Review found that healthcare providers were reluctant to use a system which only some patients were using. It recommended switching to an opt-out system to create an instant uptake of users. The PCEHR Review recognised that implementing an opt-out system was dependent on a sufficient amount of patient information being uploaded and the establishment of clear privacy and security standards.
The recommendation for the opt-out approach was met with serious privacy concerns. A number of Members of Parliament took the view that such a substantial imposition on individual rights could only be justified if it advanced a legitimate public policy objective and that merely increasing My Health Record usage did not warrant such a step.
Despite those objections, the My Health Records (Opt-out Trials) Rule 2016 bill was passed to enable the implementation of the opt-out system on a trial basis. Rollout of a full opt-out scheme will hinge on the success of these trials. So far, trials have been implemented in parts of NSW and QLD. They have seen nearly 1 million users added to MyHR with only 1.9% opting out.
The government has given no time frame for implementing a full opt-out system. The ADHA recently held a national consultation accepting submissions regarding the National Digital Health Strategy (2017 Consultation). The submission period closed on 31 January 2017. We are likely to hear more about a full opt-out system once this report is published.
Reliability of MyHR
Will your healthcare provider be using MyHR compatible software?
There is nothing which compels healthcare providers to support MyHR and the Deloitte Report warned that any electronic health record system would suffer from a lack of interest by healthcare providers.
Of course, patients are largely free to choose their healthcare providers and the National Health Services Directory now displays a MyHR logo next to MyHR compatible healthcare providers, which makes it easier for patients to use MyHR with ease and confidence. However, it is unlikely that a large number of patients will value having a unified health record enough to elect to move away from a longstanding doctor–patient relationship just to enjoy the benefits of MyHR. Realistically the successful uptake of the program will require support from healthcare providers.
Some steps have been taken to encourage healthcare providers to transition to MyHR compatible software. The Practice Incentives Program, ePIP, makes payments (capped at $12,500 per quarter) to practices which meet certain eligibility requirements and usage targets. Those requirements include:
- using compliant software to access MyHR;
- applying to participate in MyHR;
- uploading a minimum number of shared health summaries to MyHR.
This program reflects a key recommendation of the PCEHR Review, namely the use of better incentives to encourage the medical profession to use the system.
Is a patient’s record on MyHR reliable?
Not necessarily, and this is perhaps the key criticism of MyHR, and the main reason some commentators suggest that the system will ultimately fail.
A key function of MyHR is that the patient has complete autonomy over what health data gets uploaded to their health record and who is allowed to have access to that data. The patient also has the ability to remove items from view once they have been uploaded, no matter how significant the item is. As a result, MyHR cannot be relied on as a complete source of information. Accordingly, some corners of the medical profession say that acting on MyHR information presents clinical risk.
The MyHR website itself says MyHR is not comprehensive and cannot replace official medical records held by healthcare providers. Healthcare providers cannot assume that a patient’s MyHR is complete. Rather, it can only ever be treated as an “additional source of information”.
A further issue for accuracy is the permitted use of pseudonyms. MyHR allows patients to register and upload information under a pseudonym in addition to using their real name. These accounts do not have to be merged.
The AMA has criticised this level of patient control saying it is an impediment to reaching MyHR’s potential. They say that shared health records which contain predictable, core and unqualified clinical information are critical to the achievement of MyHR’s key objective; that is, to create a reliable and universally accessible source of patient data in order to drive efficiency gains across the healthcare system.
A lack of confidence in MyHR by healthcare providers is ominous. The PCEHR Review highlighted this as one of PCEHR’s main failings. The less that healthcare providers can rely on MyHR the less likely they are to use it.
Building a better MyHR platform
The PCEHR Review found that an electronic health record system requires a series of unified, integrated and extendable foundations to enable the government and private sector to provide appropriate software solutions to the industry. Poorly integrated software systems were highlighted as contributors to the failure of PCEHR.
The ADHA has published various resources for implementing and developing a better digital health platform. These include:
- ‘eHealth Foundations’ – basic technologies of unique identification, authentication and encryption to provide a safe and secure method of exchanging healthcare information;
- ‘My Health Record Developer’ – easily customised guides and resources for developers integrating digital health products into their platforms;
- ‘Implementation and Adoption’ – enhanced essential foundations and infrastructure required to enable a truly national MyHR system;
- ‘National Infrastructure’ – national approach to support private, national, state, and territory digital health reforms; and
- ‘eHealth Reference Platform’ – clinically validated technical simulator for digital health, with technical services and sample code supporting demonstration, training and development testing.
The full range of development resources published by the ADHA can be found here .
Next steps for MyHR
The ADHA has recently published MyHR statistics current to 12 March 2017. Approximately 4.6 million patients and 10,000 healthcare providers have now registered for MyHR. Almost 650,000 shared health summaries have been uploaded. These numbers show an improvement in uptake from consumers. More significantly, they show increased usage by healthcare providers to levels never seen during the days of PCEHR. As the PCEHR Review found, without adoption by healthcare providers, consumer interest will wane.
ADHA CEO Tim Kelsey described the 2017 Consultation as an opportunity for the community to voice how it wants technology to interact with healthcare. The findings from the 2017 Consultation will be used to develop a national digital health strategy. This is likely to have a large impact on the future of MyHR, including whether it becomes an opt-out system.
We also eagerly await the Productivity Commission’s final report into Data Availability and Use set to be released later this month – see our overview of the draft report here . The draft report highlights the health sector as particularly problematic in the context of data sharing and has suggested significant reforms to data and privacy laws in order to break the myriad silos that lock up our health data.
It is still too early to say whether MyHR will succeed where PCEHR failed. As a successful e-health system provides opportunities for software developers and healthcare providers alike to create better consumer offerings, this is an interesting space to watch throughout 2017 and beyond.