'Urgent need' to improve public awareness of NHS patient data use

New report from educational charity Corsham Institute calls for improvements in the public's understanding of how their health and care data is being stored, used and shared in light of a new survey from ComRes.


[London, UK] One in seven British adults are confident that their patient records are securely stored, but the NHS needs to do more to raise awareness of how this data is kept, used and shared, new research suggests.

Findings from a new report from the Corsham Institute, based on a ComRes poll from June 2018 of more than 2,000 adults, indicate that the British public has little awareness of current potential methods used to store data in the NHS, with the individuals surveyed not confident that their data was securely stored more likely to think that the information was held in outdated formats.

And while one in nine adults said it was important to know where their records were stored, 50% thought their health and care data was kept on a national computer server and 44% on a local NHS computer server, with a quarter admitting to not knowing where their patient data could be found.

In addition to recent measures introduced to improve data security and governance across health and care, such as the Data Security and Protection Toolkit, the researchers say the NHS needs to address the ‘urgent need for greater transparency’.

In a statement to Parliament at the beginning of July, health minister Jackie Doyle-Price revealed NHS Digital had identified a ‘supplier defect’ that meant 150,000 patient objections to the sharing of confidential health data for reasons beyond direct care were registered by GPs on the TPP SystmOne software but not sent to NHS Digital.

A patient caught up in the incident told the Ipswich Star last week that it left her with a 'sense of mistrust'.

“While the NHS has done much to address some of the complexities relating to the data it holds and its use, there is still a significant lag between how it, as an organisation, perceives patients’ relationship to that data and how those patients may view and understand data use in other parts of their lives," the Corsham Institute report adds.

Meanwhile, a Healthwatch survey from May 2018 found that people were less aware of ‘positive initiatives’, with only 25% knowing about the 100,000 Genomes Project, which was recently quoted as an ‘example of best practice in obtaining consent'.

The Wellcome Trust has sought to address this through the Understanding Patient Data programme, which provides a variety of resources aiming to foster conversation.

Commenting on the findings, Dr Natalie Banner, Understanding Patient Data Lead, told BJ-HC:

“The Corsham Institute’s report is a timely reminder of the importance of engaging with patients, the public and healthcare professionals about how patient data is stored, managed and used.

"The low levels of awareness highlighted by the report create real risks for people’s trust in the healthcare system to safely and securely manage patients’ data in the digital age.

"We strongly support the report’s recommendations to improve transparency about where, how and under what conditions patient data is stored."

Related content:

NHS Digital introduces Data Security and Protection Toolkit

Leontina Postelnicu

To share tips, news or announcements, contact the writer on lpostelnicu@himss.org

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