What do people think about 'fair' uses of data held by the NHS?
From the summer of 2019 to January 2020 the HVM team used deliberative engagement methodologies to explore what people think about organisations and businesses having access to data held by the NHS. Our report, published this week, was commissioned by Understanding Patient Data, NHS England with support from the Ada Lovelace Institute and the Office for Life Sciences (OLS) and overseen by a group of specialists in the field including from the NHS, industry, third sector organisation, academics and regulatory bodies and associations. Using a mixed method research programme HVM designed and delivered:
3 round tables for 30 patient representatives
Citizens’ Juries in London, Leeds and Taunton, engaging 60 people in evidence led discussions
A nationally representative survey of 2095 people across the UK
Our findings report Foundations of Fairness highlights the high value people place on data held by the NHS. Those engaged spoke of the opportunities afforded by using data to improve patient outcomes if all those involved:
Work transparently
Are accountable
Work to a set of agreed principles
Make decisions based on the best interests of the citizens the NHS serves.
Understanding Patient Data and Ada Lovelace have written a companion summary and analysis of research findings within the wider policy context.
We are enormously grateful to all those who shared their views and expertise within this programme including, PPI groups, Citizens’ Jury members and those who responded to the survey. Your voices were heard and your views will inform the frameworks which govern access to data held by the NHS. Thank you for your rich and rewarding insights.
