NHS gets new guidance on public benefits of data sharing

The NHS’s national data guardian for health and social care, Nicola Byrne, has today issued fresh guidance addressing the question of what is meant by “public benefit” and how health and social care bodies should evaluate said benefit when using and/or sharing patient data for purposes that go beyond individual care.

Developed with input from the general public, the guidance will supposedly improve the quality and consistency of the public benefit evaluations that health and social care organisations are obliged to conduct if planning to use, or share, data collected during the delivery of care for planning research and innovation.

Byrne said that during the course of the consultation exercise, it had emerged that most people consider secondary use of their patient data as appropriate and acceptable if it delivers a benefit back to them.

She said most people were “rightly cautious” about other organisations accessing healthcare data when it is not being used in their direct care, but most were also altruistic and were likely to support having their information used for other purposes if the benefits and protections were explained properly.

The new guidance will help the health and social care system to better interpret and demonstrate public benefits comprehensively, accurately and consistently, improving and standardising evaluations to support better decision-making by data holders.

“It is my mission to support the health and care system’s shared vision of improved health outcomes for all through the safe, appropriate and ethical use of data,” said Byrne. “This vision relies on earning the public’s trust in the use of their data by those who can unlock its potential to deliver improved healthcare services and develop new and improved treatments.

“Public engagement consistently confirms the need for use of health and care data to be of benefit to the public. Thus, better evaluations of how the public will benefit from projects which use health and care data for planning and research are a key aspect of earning public trust. Following this guidance will help organisations interpret and apply the concept of public benefit in a way that accurately reflects people’s views on how trust is earned in this context.”

The latest guidance comes relatively soon after Byrne spoke out over the proposed programme to create a federated data platform for the NHS, which will go out to procurement in the near future, saying it must be clear and open with the public to avoid repeating the mistakes made by the failed Care.data platform.

In statements made in November 2022, she said: “Public trust can only be earned through a commitment to honesty and transparency. There must be no surprises for people about how their private information is being used. I have made clear that NHS England needs to allow sufficient time to listen to patients and professionals and then adapt plans according to what it hears.”

Public trust issues were similarly at the core of the controversy over the 2021 attempt to scrape patient data from every GP in England into a vast data store to support a programme called General Practice Data for Planning and Research (GPDPR). The programme almost collapsed under the weight of public anger precisely because people were not made properly aware of the potential benefits of sharing the data for research purposes.

NHS Digital was accused of failing to communicate the value of the programme, which was seen as a failure given that public support for the use of data for planning and vaccine development through the Covid-19 pandemic had been generally high.

During the summer of 2021, the issues saw the programme put on hold pending certain criteria being met, and in May 2022, the whole exercise was branded “wrong” and “a mistake” in evidence given to the government’s Science and Technology Committee by prominent academic, physician and writer Ben Goldacre.

Subsequently, a new strategy for data in healthcare was announced by the then health secretary Sajid Javid, and behind the scenes, work has been continuing to get GPDPR back in the air again, although according to health sector magazine Pulse Today, its roll-out is in doubt after its budget was slashed by almost three-quarters.

Commenting on the latest guidance, Kirsty Irvine, chair of the independent group advising NHS Digital on the release of data, said: “I am delighted to support this guidance, which I trust will prove to be an essential point of reference for data custodians.

“The product of extensive public engagement, What do we mean by public benefit? firmly establishes the importance of transparency to help build the public’s trust and confidence in the use of their data. It also acknowledges that there may be commercial aspects to the use of health data – and gives a helpful steer on how to assess the public benefit in these complex cases.”

Jacob Lant, head of policy, public affairs, research and insight at Healthwatch, an independent statutory body that delivers public feedback to NHS leadership, added: “Our work has repeatedly shown that people are broadly happy for their health data to be shared for research purposes, as long as it is used for public benefit. Yet in practice, we have seen public confidence in data sharing fall because policy-makers and professionals haven’t taken the time to build the necessary trust.

“This guidance is a welcome step towards increasing transparency and clarity around the benefits to data sharing. Crucially, the public engagement underpinning the guidance demonstrates that it is responding directly to public views, which is an important step towards rebuilding public trust.”