NHS must protect and build public’s trust in its ability to safely handle health data, report argues

Good health data, used well, can deliver real benefits for patients – improving the quality of care, reducing waiting lists, and tackling inequalities between social groups. 

But a new report from the Health Foundation finds that government and the NHS must do more to improve public trust in how the health service handles data, as it faces public scrutiny following the award of the £330m contract for the Federated Data Platform. 

One of the largest surveys of public attitudes to health tech and data, carried out by Censuswide on behalf of the Health Foundation, finds: 

• The public largely trust NHS organisations with their data, with 69% saying that they trust GP practices, 68% local NHS hospitals and clinics, and 64% national NHS organisations. 

• By comparison, 42% trust companies who provide the NHS with software to collect, store and use health data, and only a third trust local and national government with their health data.  

• Over half (57%) of people aged 16–24 trust national NHS organisations with their data – but this is a significantly smaller proportion than for older people (74%). 

• Awareness is low, with more than six in ten of the public (61%) saying they know ‘very little’ or ‘nothing at all’ about how the NHS is using the health data it collects. 

• The public is, on balance, happy with a range of uses of data outside the delivery of care – such as for service planning, research and the development of medicines (also known as secondary uses) – including where the data is identifiable and being used by commercial organisations. However, many secondary uses of data are not supported by around 1 in 5 people, even with anonymisation. 

Public trust is critical, the report warns – without this, initiatives to harness the benefits of greater use of health data will be less likely to succeed. This is because more patients may opt out of their data being used for research and planning, meaning these data sets may be less representative, reducing the reliability of the data for the NHS and researchers. 

Politicians and NHS leaders should commit to a meaningful conversation with the public on the future of technology and data in health care, both to understand and address concerns, and to raise awareness and build confidence in the use of health technology and data, the report concludes. 

Given the differences in attitudes among age groups identified by our survey, as the NHS launches its large-scale public engagement events on the use of health data next year, it will be particularly important to ensure young people are effectively represented so their concerns can be heard and influence future policy. 

Dr Malte Gerhold, Director of Improvement and Innovation at the Health Foundation, said: 

‘Health data can deliver real benefits for patients so it’s encouraging that the public largely trust the NHS with their information. But as the use of people’s health data comes under intense public scrutiny, the NHS must work to protect and build on this existing public support for how data is used. Greater public engagement on health data can play a vital role in helping address concerns, build confidence, and ultimately improve services for patients.’