By Natalie Banner (Understanding Patient Data Lead), Tom Harrison (Senior Policy Officer) and Grace Annan-Callcott (Communications Officer).
During the 2019 General Election there were several news stories about commercial access to NHS data. The public reaction to these stories reinvigorated debates about patient data – and has highlighted the role that government needs to play in ensuring data use is trustworthy. Here we outline what the new Government must do to realise its election pledge for “world-class health data and computer systems” to aid research and transform diagnosis and treatment.
Trust is hard-won and easily lost
Collecting, storing and using patient data is an essential part of providing and improving healthcare. It is critical to the effective performance of the NHS. Data can help monitor the way services are performing, the ways people are experiencing care, or the safety of drugs and vaccinations. In short, we can’t do without it - and should be doing better with what we have.
But the benefits of using data must outweigh the risks. And people should be able to understand how the NHS and other organisations use it: as the National Data Guardian says, there should be “no surprises” when people learn about how data from their health record is used. Otherwise, we risk a catastrophic loss of trust from both patients and health professionals.
Three steps the Government must take to build a system the public have good reason to trust
1. Increase the visibility of what patient data is used for – and the benefits it can bring to the NHS
Right now, it’s hard for people to find out, let alone understand, the role patient data plays in providing care, and managing and improving the health service. When combined with recent news stories, this lack of visibility risks damaging people's trust in the health and care system.
The Government needs to do a better job of supporting the provision of access to information about data use, address people’s concerns and indicate what choices people have to object. Routine signposting to resources about different uses of patient data, including in healthcare facilities and on data controllers' websites, would help build awareness in how data is used. But it’s crucial that information is accurate, comprehensive and easily accessible - which takes time and resource to get right. Incomplete or hard to find information can easily undermine trust and arouse suspicion, especially if it appears as though details are being obscured or positively spun.
2. Ensure commercial access to data only occurs when there’s explicit public benefit
Commercial access to patient data is particularly contentious. However, research has shown that most people support commercial use of patient data if there is a clear public benefit. And NHS organisations are highly trusted when it comes to patient data use, so the public expect them to behave responsibly.
The Government has an important role to play in ensuring that commercial access to NHS data is only ever allowed when there’s a clear intention to create public benefit. The Code of conduct for data-driven health and care technology is a positive start, outlining the standards of transparency and accountability expected for companies using patient data.
However, a voluntary set of principles or guidelines is not enough. The Code is being reviewed over time, and organisations accessing NHS data should be publicly held to account for their adherence to the Code. In addition, any new policy frameworks must ensure clear NHS and patient benefit underpins all partnerships with companies using NHS data.
3. Embed public views and values in decisions about how NHS data is used
Decisions about how to use patient data are complex. As well as complying with the law, data controllers need to manage trade-offs between the benefits and the risks, between individual privacy and public good. Deciding what constitutes ‘public benefit’ is nuanced, so decisions about use of patient data must include people from different backgrounds, with a range of different perspectives.
This is starting to happen more consistently. The new data hubs setup by Health Data Research UK were selected by an independent panel involving patient and public representatives. Criteria included plans for involving patients and the public. A number of Local Health and Care Record Exemplars are leading the way involving the public in their decision-making.
But public involvement shouldn’t be sporadic – it needs to be embedded into the culture of making decisions about patient data. And it’s critical that people from groups whose voices aren’t usually listened to are included in decisions in a sustained way. Public views and values must be systematically embedded in governance and decision-making for initiatives or programmes set up to enable use of patient data.
Safeguard data and transform care
The lack of transparency around how patient data is used is at the heart of the recent stories criticising commercial access to NHS data. The stories highlight the legitimate concerns from many about the use of patient data.
The Government must now act to guarantee that the uses of patient data are made more visible, that commercial access is only allowed when there’s explicit public benefit, and that the public is actively consulted on risks and benefits. Failure to do so may undermine the Government’s intention to transform care and treatment through capitalising on the potential of NHS-held data.