Public Services > Healthcare

Royal Society calls for new independent UK data oversight body

Neil Merrett Published 29 June 2017

Joint report with the British Academy says fresh approach required to establish a framework to balance individual privacy with considerations for public service/economic benefits

 

The UK should establish a new independent oversight body to ensure public confidence in the use of personal data to inform public sector, healthcare and business service delivery, according to joint findings from The Royal Society and British Academy.

In a new report compiled by the two organisations, existing arrangements for the management and use of data, such as the information sets compiled and held by government, were argued to have failed to keep up with recent technological advances.

The report, entitled ‘Data Management and Use: Governance in the 21st Century’, looked at the current landscape around data usage. The findings noted how the collection and management of information and new ways of utilising it had created difficulties in understanding and defining what sort of data should be classed as sensitive, as opposed to information that can be made freely available.

Data sharing and the collection of information are viewed as being an increasingly important part of Whitehall’s digital transformation aims, not to mention in supporting broader economic innovation.  But Whitehall's own ambitions have been undermined by critics in parliament, as well as civil society, that argue too little transparency is being provided on how data is used.

The report’s recommendations, drawn up from experts working in the fields of science, humanities and social sciences, seek to overhaul current systems and regulations used to govern data use. 

Amidst key conclusions, the study said that while existing data governance bodies in the UK were mostly capable of meeting upcoming challenges, there were key gaps that needed to be addressed, as well as concerns about an ongoing reliance on silos such as how Whitehall departments individually create and hold information.

It therefore recommended a new independent body be established to work alongside existing organisations like the Information Commissioner’s Office (ICO) to steward data governance on a wider national level.  This would include monitoring and evaluating projects and data mechanisms needed for transforming public service delivery.

“The report stresses that any form of governance needs to be specific to context recognising that, for example, the benefits and risks of use of data in online shopping are different to data being used in a healthcare context,” said a summary of the findings. “Rather than restricting innovation, the report finds that a clearly defined framework setting out acceptable uses of data would give stakeholders the confidence to explore new technologies and enable society to reap the benefits that these technologies can deliver.” 

The Royal Society also called for the implementation of a series of principles on ensuring data is used to support individuals and communities.  This would include measures to enhance existing democratic governance and provide a means of learning from both good and bad practice already in place.

The report also touched on complications experienced with major public sector data sharing initiatives such as NHS England’s abandoned care.data programme – provided as an example of the highly negative response that can occur for poorly handled data programmes.

“For example, the care.data centralised records system, which would have seen GP patient records opened to analysis by the National Health Service (NHS) and some third parties, could have provided an invaluable research resource and an important nationally strategic data set,” the findings said.

“However, issues with management and communication, unrealistic expectations around the feasibility of rigorous anonymisation, and legal tensions and complications all contributed to difficulties in the rollout of this programme, which is now generally regarded as having failed.”

The report argued that with data and its supporting infrastructure becoming increasingly complex and interlinked, traditional notions of privacy and methods for protecting identifiable information were being stretched to their limits.  New approaches in trying to ensure a more balanced approach to compiling personal, sometimes sensitive information, were seen as being needed.

“Data is also now often collected without explicit knowledge.  It may be gathered from spheres previously thought of as private and combined with other datasets to reveal information which, in another context, is willingly shared through social media,” said the findings.

“The notion of privacy is also being stress-tested through the increased power of algorithms and their ability to infer and predict behaviour.”

Additional complexity was noted in deciding when individual interest and concerns about privacy should be prioritised over the public good, or when public good concerns should override commercial interest.

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