A global digital health leader has called for a rethink on the fundamental technology underpinning My Health Record, adding his clout to the submissions to the Senate inquiry into My Health Record.
Creator of the FHIR standard Grahame Grieve, who has provided technical advice to the My Health Record program since its inception, has called for an overhaul of the national health information platform, which he says was built on technology that was state-of-the-art in 2007.
In the decade since, according to Grieve’s submission to the parliamentary inquiry, technology and society have changed through the introduction of smartphones, wearables, cloud computing and high-speed broadband, and with these tech advances have come major developments in data exchange protocols.
Grieve has called on the Department of Health and Australian Digital Health Agency to augment the current system’s centralised database by “working with the community to define an alternative architecture for a federated system for healthcare data exchange”.
Publication of his submission came as the first public hearing of the Senate Inquiry began in Canberra on Tuesday.
Within the testimony from Australian healthcare, data privacy and technology experts came calls for private health insurers to be shut out of the platform.
The Australian Medical Association’s Medical Practice Director Luke Toy reinforced the group’s support for My Health Record and called for the framework governing the secondary use of the data to become a regulated instrument, with any changes requiring parliamentary scrutiny. Currently insurers are unable to access the data but the framework allows the rules to be reviewed in 2020, but the AMA urged that access by them continue to be blocked.
"We think that call can be made right now," Toy told the inquiry.
Concerns about the ADHA’s My Health Record opt out communications campaign were raised by a number of witnesses to the inquiry, with the Australian Healthcare and Hospitals Association’s Senior Research Director Dr Linc Thurecht recommending that letters be distributed to each Australian household explaining the benefits of the platform and how people can set access restrictions.
Meanwhile, long-time GP and former AMA president Dr Kerryn Phelps told the inquiry that while she was initially cautiously optimistic about the platform, she had grown increasingly concerned as the project had “moved to create what would be the most valuable database ever assembled in Australia”.
She claimed the recent introduction of legislative amendments to the system in reply to recent controversy, which would prevent access to records by law enforcement and government departments without a court order and allow the permanent deletion of records on request, show the need for a complete review of the My Health Record legislation to see “what other hidden landmines are there”.
Phelps also called for greater control over the operations of the ADHA.
“Amplifying the privacy and security concerns is the abandonment of any oversight, review or accountability for the Australian Digital Health Agency. So the governance and oversight of the ADHA must also be reviewed,” she told the inquiry.
The ADHA said in a statement that it welcomes the discussion and will be contributing to the inquiry.
“The Australian Digital Health Agency has been engaged in an important national conversation around My Health Record – its benefits, privacy controls and security protections. As the system operator responsible for the expansion of this system, the ADHA welcomes this discussion,” the statement said.
“Our objective is to ensure Australians are able to make an informed choice on how they control and interact with their healthcare information. The ADHA appreciates individuals and organisations providing their opinions and proposals to the Senate inquiry.
“The ADHA looks forward to participating in the Senate inquiry on September 17th. The ADHA will be speaking to its own submission in response to the inquiry.”
In his submission, Grahame Grieve – who works with Cerner, Epic, AllScripts, Apple, Google and other companies, as well as national healthcare programs worldwide through the Argonaut consortium – says despite My Health Record being a significant technical achievement it is now out-of-date and in need of drastic change.
“The existing MyHR system is a significant achievement: Australia has a national health records system based on solid technical standards. An under-appreciated amount of political, policy and technical development was needed that depended on extensive bipartisan, agency and state support,” Grieve’s submission says.
“The design of the system and the standards it is based on were state of the art in 2007. Although a more distributed design was initially planned, it is now, unfortunately, a centralised national database of static summary documents. This was an inevitable consequence of the technical standards used at the time, but now constrains the use, extensibility and therefore the value of the system.”
[Read more: Australian FHIR innovation a frontrunner as the US government looks to standardise health data exchange | The titan enters the race: Apple to launch Health Records app with HL7's FHIR specifications at 12 hospitals]
Grieve developed the FHIR specification in 2011 to further the use of web APIs in healthcare but claims the My Health Record was headed down a set path.
“It was apparent then that the technical standards on which the MyHR was based were leading to an overall design that would lack the functionality and flexibility which consumers and providers now expect,” he writes.
He also says the National Digital Health Strategy published last year recognises contemporary technology and public expectations but the standards and overall design of My Health Record are “not fit for this purpose”.
The ADHA is currently “re-platforming” My Health Record, a process due to be complete by mid-2020 when the existing operational contract ends, but according to the submission, the tight deadline means it is now too late for extensive public consultation or fundamental change.
Grieve also claims Australia is “clearly lagging behind other countries” that are prototyping innovative digital approaches to solve healthcare problems, and also risks stifling innovation here through the focus on its centralised data repository.
“Successive governments have had a strong focus on building towards the success of the MyHR. The result of this is that all other health IT projects are forced into the strait jacket of the centralised document store with its limited consent model, or they are de-prioritised and/or unfunded by DOH or ADHA,” he writes.
“The industry expects that this narrow focus will become more intense after DOH makes another round of investment in the system (re-platforming).
“An ongoing focus on a centralised document store with inflexible consent arrangements will ensure that the political controversy continues. Suppressing other options will continue to raise suspicions that the government is seeking to gather and use people’s healthcare data and/or restrict innovation in healthcare.”
The submission has been endorsed by other industry experts including Georgia Tech’s professor of the practice Dr Mark Braunstein, Medical Software Industry Association president Emma Hossack, and past CIO of Tasmania’s Department of Health and Human Services and strategic e-health advisor to the Federal Department of Health Tim Blake.
Grieve told Healthcare IT News Australia that he felt compelled to contribute to the inquiry as a matter of principle.
“The point of the FHIR work is to make people's healthcare better. In particular, my family and friends’,” he said.
“While FHIR is a worldwide project, I'm very engaged with what is happening here in Australia. The current course here does not lead to outcomes that are consistent with my goals. I've engaged with the [My Health Record] program as best I can but cannot influence the overall direction from within, hence my submission.”
Last month the government supported the Greens in referring the issue to the Senate's community affairs committee, preempting Labor’s plans.
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