Lack of clarity around data sharing risks ‘irreparable mistrust’, NHS Digital chief warns


Absolute clarity is needed around how the NHS will use patient data or we risk “deep and almost irreparable mistrust”, the NHS Digital chief has said.

Sarah Wilkinson said the NHS needs to formalise its position on the secondary use of patient data in order to fully benefit from the insights already available within the national data set.

Speaking at a Kings Fund and IBM Watson event on artificial intelligence in healthcare on Tuesday, Wilkinson said we need to “directly address people’s concerns by laying out our ethical approach to dealing with data and providing absolutely clarity on how we intend to use health data”.

She warned that “political interest” could interfere while there is no clear guidance.

“Today the legislation that governs the use of health and care data in the system allows for multiple interpretations,” she told the audience in London.

“There’s a danger that judgements are made about health and care data that don’t accord with the innate understanding of how the NHS will use their data, and I think if we get that wrong there will be a deep and almost irreparable mistrust.

“I believe we need a much more open debate about balancing the risks and opportunities associated with different uses of this data and we need to formalise our position on acceptable uses so that we can be really clear with citizens.”

Ms Wilkinson said the lack of clarity around the use of data was “slowing us down” and that mistrust in the system could have a “dramatic impacts” on quality of research.

“We have this internationally unique data set and now we have the tools to derive insights from it that have never been previously possible,” she added.

“But we are not going at this opportunity fast enough.

“It’s really clear that there are insights available today, from the data in the system today, which would enable us to treat patients much more effectively today, but which we haven’t yet extracted.”

The NHS is currently reviewing it’s confidentiality code.

Last year NHS Digital’s sharing of non-clinical patient information with the Home Office was branded “entirely inappropriate” by MPs.

An inquiry was launched into the memorandum of understanding (MoU) on data sharing between NHS Digital, the Department of Health and Social Care and Home Office, which allowed the Home Office to gain access to patient data – including non-clinical information – for the purpose of tracing immigration offenders and vulnerable people.

Senior members of NHS Digital were later criticised for refusing to stop disclosing patient data with the Home Office.

The MoU was suspended in May 2018.

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