The Australian Government has successfully trialled the use of blockchain technology to allow researchers to access medical information contained within platforms such as My Health Record, but the quality of MHR data remains a problem.
Australian companies Agile Digital, Vault Systems and Gulanga, together with the Federal Department of Health, achieved proof of concept for the technology, which avoided the need to distribute bulk data to health researchers, instead bringing researchers to the data.
The innovation has been awarded the Big Data Innovation of the Year at the Australian Information Industry Association’s 2018 ACT iAwards for the Secure Health Data Research and Analytics Platform.
Believed to be the Federal Government’s first implementation of blockchain technology, the platform allows health researchers to undertake large-scale studies using patient data in a secure cloud-based environment without the risk of data breaches or re-identification of patient data.
Earlier this year the OAIC ruled that the Department of Health had breached the Privacy Act by publishing an anonymised MBS and PBS dataset after some patients were re-identified by Melbourne University researchers in 2016.
According to Agile Digital’s executive director David Elliot, the department has increased its risk-proofing for sensitive data and looked towards new tech approaches.
“They are super-focused on protecting privacy and how that can be done. So they're wrestling with this double-edged sword of wanting to draw value for public health research but not ever expose someone's records,” Elliot said.
“They've had some close shaves in the past because it's quite a pernicious problem to try to anonymise a record in a way that it can't be de-anonymised. In the past they've tried to anonymise records and distribute those anonymised data sets to researchers. They're quite clever boffins, the researchers, and they've gone and put correlations out and said we think that's Mrs Smith.”
Using Agile Digital’s blockchain-backed platform and Vault Systems’ protected ASD-certified cloud, big data experiments can be carried out by researchers without direct access to health records.
“We said, ‘Listen guys, why not give up trying to anonymise the data? Assume it can't be done in a useful fashion, because by the time it's anonymised to the point where no-one could de-anonymise it, it'd be useless gobbledygook. So let's leave the data buried in secure storage and we will make a laboratory essentially for researchers that allows them to formulate the hypothesis which might be all male Australians over the age of 40 who have been smoking, how many have seen a doctor in the last six months, stuff like that’.”
In the proof of concept, which was designed and built last year, the Department of Health was able to record which researchers accessed what data and the results received from the analysis, which also allows research collaborators to irrefutably claim credit for their individual work.
The trial was conducted with internal government researchers using data from the commercial Teradata external system. The technology is undergoing security reviews, penetration testing, code level reviews and IRAP certifications prior to its possible deployment by the government.
Elliot said the blockchain technology allows researchers to submit their experiments and walk away, leaving the platform to sift the data and reveal insights, notarising the hypothesis pathway.
But the quality of the data in My Health Record poses a “grand challenge”.
“If you don't have data with a clear ontology in a standard format nobody can do useful things with it.”
It is a challenge the government is grappling with.
“They feel that pain and so I think with My Health Record part of it is trying to drive towards a more standardised data capture so that people can do more useful and valuable queries. But that's an existing problem and it's more than just about computers, that's a really tough states and territory negotiation and policy problem.”
Elliot said the proof of concept could lead to the tech also being introduced by the government for veterans' health records.
From as early as 2020 the medical information of Australians will made available to third parties – including researchers and companies – unless they take steps to stop it being shared, according to the Framework to guide the secondary use of data in My Health Record system released two weeks ago.
All Australians will have a My Health Record in 2018 unless they opt out of the system during a three-month period from 16 July to 15 October 2018. Those who are handed a MHR will automatically be signed up for the secondary use of their data and can opt out by clicking on a ‘Withdraw Participation’ button.
If they don’t opt out, according to the framework, consumers can limit access as “any data or document that they have classified (using consumer controls) as being ‘Restricted Access’ or that they have removed will not be retrieved for secondary use purposes”. Data in a cancelled record will not be accessible.
Last week a new report published by the Consumers Health Forum and NPS MedicineWise found that 89.9 per cent of Australians believed the information they tell their health practitioners is confidential.
The Engaging Consumers in their Health Data Journey report found that most consumers (70 per cent) agreed that their primary treating team should have access to their health data, but 86.7 per cent said they want to be able to provide permission each time an organisation wants to use their data, especially private organisations (94.3 per cent).