Written by the Understanding Patient Data Team. 

Today, we’re publishing new research on how stories about health data have been reported in the UK media over the last 18 months. 

It will come as no surprise that the biggest peak in media coverage was caused by the launch of the Covid-19 contact tracing app, with commentary dominated by concerns about how data collected by the app might be used. 

Our research also found that since the start of the pandemic, coverage about health data has increased overall - including stories that aren’t directly related to Covid-19.  With more attention being given to the way health data is used, there’s an opportunity to increase awareness of how it can benefit people and society.    

But stories focused on the risks of using health data receive the most public attention – much more than stories about benefits or successes. This highlights the need for risks to be openly recognised, and transparently and proactively managed. 

Graph showing media coverage of health data stories

Graph showing volume of media coverage over time and highlighting key moments.
Main takeaways  

1. Reporting on health data is most positive when there is a clear benefit to people’s health. Overall, more news stories were positive than critical. But these stories tend to only focus on the end result (a new treatment, drug, or piece of technology) and rarely explain the role of health data in getting there. So despite the positive tone, these stories don’t lead to widespread public awareness of the benefits of using health data. 

2. Stories about the risks of using health data get the most attention. The media usually only analyses the way health data is collected, stored and used when something goes wrong (like a data breach). These stories have the most cut-through with the public, leading to a big focus on risks in public conversation. The greatest criticism occurs when private companies access data, especially if they have a poor public reputation. 

3. Discussions about health data are highly politicised. Stories about health data are often tied to broader issues, like elections, privatisation of the NHS or the ways tech companies use data. The greatest scrutiny comes when NHS data is involved, especially if it’s shared with international organisations.  

4. Individuals are positioned as passive players. There is limited focus on the role individuals can play in managing data about their health. This is likely to be increasing sentiments like anger and fear in public conversation. People’s options for consent or dissent (for example, via the national opt-out) often aren’t mentioned.  

Methodology 

We commissioned Portland Communications to carry out an analysis of media coverage between May 2019 and October 2020. The report highlights the main themes in news stories about health data and how coverage has changed during the Covid-19 pandemic. It also investigates which stories have the biggest impact on public debate, thorough analysis of conversation on social media. It’s important to recognise that whilst social media can give us an indication of the impact of media on public discourse, it doesn’t capture everything. We explain more about the research approach in the report.  

Next steps 

You can download the report here. Like most of our content, it's available on a CC-BY licence. The full methodology and search strings are published in the appendix, as we’re keen for others to be able to repeat this research themselves.  

We’ll be using the findings to shape how we communicate and engage with journalists. But we believe it will be useful for lots of other people too, which is why we’re publishing our results and methodology in the open.  

If you’re interested in learning more or talking to the team about this work, do get in touch at hello@understandingpatientdata.org.uk