Dialogue undertaken by National Data Guardian will look at what uses citizens find acceptable

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A government project is to examine public opinion towards the use of sensitive health and social care data in research and policymaking.

The “public dialogue” exercise is being led by the Office of the National Data Guardian for Health and Care, Dame Fiona Caldicott. The office is jointly funding the scheme alongside the Understanding Patient Care research programme, and Sciencewise, a government-backed scheme dedicated to designing policy that is informed by public attitudes.

Caldicott said that the project had been planned long before the coronavirus pandemic, but that its research would now bear in mind how public sentiment might have been affected by the current crisis.

Over the course of a series of “workshops” to be held later in the year, the government will seek to explore citizens’ feelings about the use of their personal health and social care data in the context of delivering their own care or services, as well as for wider “research and innovation” purposes.

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“The extent to which such purposes benefit the public is the critical crucial condition for their acceptance of its use,” Caldicott said. “We know that concerns can be raised when organisations with commercial interests are involved in using data generated by our use of publicly funded NHS and social care services. We’ve seen this many times in our engagement to date; previous pieces of research; and in media, social media and public discussions.”

She added: “This dialogue will improve our understanding of how the public assesses and weighs the public benefits and disbenefits of proposed data uses in a range of scenarios. We will ask our public participants which benefits count as ‘good enough’ to make the use of data acceptable in their view.”

Following the completion of the workshops – which will take place in Reading, Stockport, Great Yarmouth, and Plymouth, and will be conducted by social research firm Hopkins Van Mill – a report summarising their findings will be published in about a year’s time. 

The National Data Guardian’s office will then work with Understanding Patient Data to draw up “public benefit guidance” that would potentially inform NHS bodies and local authorities in their use of sensitive data. These draft guidelines will be submitted to further workshops in which original participants will be invited back and asked whether the proposals “meet their expectations”.

Caldicott said: “We are keen to ensure that we… look at some more complex questions: what about when a use of data might benefit some groups of people, but not others? what if it’s quite uncertain what the results of a piece of research might be? what if it won’t benefit the people whose data was used or their families, but instead people who are quite distant, perhaps in another country, or many years hence? How do these factors affect people’s attitudes towards whether there is enough public benefit to merit data being used?”

She added: “The National Data Guardian intends to develop guidance or advice that would help organisations to carry out public benefit assessments with greater consistency across the health and social care sector. This will help a range of bodies and data controllers to make decisions about whether data should be used for purposes beyond individual care. Working with Understanding Patient Data and the members of the public that we will be involving in our dialogues, we aim to ensure that what we develop is in line with the public’s values.”