From The Country That Gave Us The ADHA CEO Comes A Stern Warning About Health Information Protection And Use.

This appeared last week:

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.

Andrea Downey

15 March 2019

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.

More here:

https://www.digitalhealth.net/2019/03/lack-clarity-data-sharing-risk-irreparable-mistrust-nhs-digital/

This barely needs comment. The zeitgeist has changed since the Cambridge Analytica saga and other major data abuses. I believe the fact that 2.5 million people opted-out of the #myHealthRecord tells you all you need to know about public attitudes in regard to security and privacy of personal health information.

The bureaucrats and other secret information sharers in Government need to take careful note in regard to openness and transparency and the acquisition of proper consent. The backlash will be violent and brutal if they don’t!

David.