The power and promise of transparency: sharing health data during a pandemic

Why it matters 

Our health and social care data may be useful in helping to improve services, reduce costs, and offer more personalised care. The UK government has highlighted the potential economic value of patient data, but efforts to improve health and social care data sharing face challenges due to poor infrastructure and a lack of communication with the public, which has led to mistrust and concern. 

Research over the past decade has explored how different groups view the sharing of their health and social care data. Across various studies, people have consistently expressed their concerns about transparency, the need for consent, and data security. Many participants found the topic complicated, but still shared common beliefs about how this type of data should be handled, regardless of country or setting. 

During the COVID-19 pandemic, governments shared health data in order to track and respond to the virus. In England and Wales, emergency regulatory measures allowed for wider use of confidential health data without people’s consent. Although this was justified at the time as being necessary for public health, the public were not widely consulted.  

To gauge public opinion on the extended data sharing that took place during the pandemic, three citizens’ juries were created between March and May 2021. Each jury was made up of 18 jurors who were broadly representative of the population in England in terms of age, gender, ethnicity, educational attainment and their pre-existing views of data sharing. 

We asked the juries to look at three data initiatives (The Summary Care Record Additional Information; NHS COVID-19 Data Store and Platform; and OpenSAFELY), and observed their extensive small-group discussions, to understand how jurors made sense of the justifications for extended health and social care data sharing. Our goal was not to assess the pandemic response itself, but to explore whether public attitudes to data sharing had changed during this real-world crisis. 

What we found 

The people who took part in the citizens’ juries were particularly focused on the idea of visibility – who saw what, and how much they saw. 

Our findings revealed that public attitudes towards health and social care data sharing during COVID-19 hadn’t changed much since before the pandemic, and that people weren’t convinced that the emergency had justified removing safeguards. Jurors asked things like, “are we considering if a pandemic is an emergency and the bending of the rules?” and, “They say ‘it is an emergency’, and they can just do whatever they want. I think it should be for as short a time as possible. It needs to be debated and properly considered. I don’t want these emergency powers to be in place forever.” 

Although they were generally in favour of new data-sharing initiatives to support the COVID-19 response, their support was conditional on increased transparency – in fact, the word ‘transparency’ was mentioned over 350 times during the small group discussions. 

This suggests that any research around health data sharing should try to understand what ‘transparency’ means to different groups of people. While past research has often focussed on transparency in itself as a recommendation and an outcome of data-sharing concerns, people want to know who is involved in collecting and sharing their data, and to be reassured that whoever it is, is subject to oversight and scrutiny. As health data becomes more complex and involves more organisations, including private technology companies, it will become even harder for the public to understand who is responsible and how decisions are made. This complexity risks making the idea of transparency meaningless unless those in charge of data – like the NHS or government – actively communicate with the public in a clear and accessible way.  

Transparency was also tightly linked with trust. Most jurors trusted the NHS but became sceptical when Big Tech companies – the most dominant and largest technology companies in their respective sectors, such as Google and Microsoft – were involved. Government messaging during the pandemic justified the lack of transparency by suggesting that it was to protect the NHS, which made it harder for some jurors to raise valid concerns without being labelled as conspiracy theorists.  

Our research shows that visibility, transparency, and trust are not just abstract ideas – they have real effects on how people feel and act. It argues that policy should go beyond simply calling for “more transparency”. Instead, governments and organisations should share responsibility for communication, ensure the public can genuinely take part in decisions, and allow room for critical voices. This way, the public can be more informed and empowered.