BCS pushes for open healthcare data

The British Computing Society has written to health secretary Andrew Lansley urging the government to open up healthcare data.

The trade body has not made the letter public, but told ZDNet UK on Thursday that it contained three main recommendations — to give patients online access to their own records, to make bulk anonymised data available for public analysis, and to compel healthcare providers to create interoperable data systems.

The recommendation that patients be given online access to their own medical records has the aim of making them more aware of their clinical information, British Computing Society (BCS) health vice chair for strategy and policy Justin Whatling told ZDNet UK. It would also help provide patients with access to services such as repeat-prescription management and secure email to their GP.

In addition, patients should be given a degree of control over who views their medical records, he said. "We use online banking because it gives us utility — you can see your balance or check your statement. It's all a co-production model. This is a big opportunity in healthcare."

Another recommendation was that the government should make anonymised and pseudonymised patient data available to public scrutiny. The data could be used to measure the outcomes and efficacy of particular treatments and healthcare units.

"Internal benchmarking can be a powerful tool for change, but if we get it wrong, it could put people's backs up and they will withdraw," said Whatling. "Benchmarking is a tool that's already in place [in the NHS], and it's effective in schools, but we want to make sure there are fair comparisons."

Whatling said that data needs to be captured in ways that do not allow people to misinterpret the information.

Finally, government policy should make healthcare providers develop data systems that allow the sharing of information, Whatling added. "We need to be able to share data around systems," he said. "Electronic patient records sit in hospitals, and each contain their own datasets. Systems suppliers should line up open APIs. If we don't get this right, we'll have a patchwork quilt [of systems]."

Cambridge University professor of security engineering Ross Anderson told ZDNet UK on Friday that open APIs would not be as effective as open-messaging standards to achieve interoperability.

"This is a detailed business of application-level design," said Anderson. "It's about sitting down and working out message types."

Anderson said that healthcare messaging standards were being established at a European level by a European Union workgroup called CEN/TC 251, and that to attempt to work out standards at a lower level would not be efficient.

Increased data sharing for benchmarking purposes presents privacy problems, said Anderson. It is virtually impossible to anonymise patient data, he explained, as it is possible to reformulate an identity from multiple records.

"As soon as you ask more than three or four questions about a person from anonymised records, they are not anonymous anymore," said the professor. "Re-identifying data is so easy that researchers lost interest in it in the 1980s."

Questions also remain about access to records, said Anderson. A centralised system is open to abuse by agencies that have access to those records. In addition, patient access to records could open people up to coercion by family members to divulge medical details, said Anderson.

Whatling is the chief clinical officer for BT Health, which provides communications and IT services to the NHS. Whatling is also the vice chair of BCS Health. The chair of BCS Health, Matthew Swindells, is due to take up a position in the coming months with US healthcare company Cerner, which specialises in information-sharing products.