We funded research into how news stories about health data are reported in the UK media. The report looks at how different outlets cover the issues, which stories have the most cut-through with the public and how coverage changed during the pandemic.
About the research
We commissioned Portland Communications to analyse UK media and social media coverage between May 2019 and October 2020.
The biggest peak in media coverage during the period 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.
Stories focused on the risks of using health data receive the most public attention, and often lead to speculation and politicisation. Rumour and misinformation thrive in a vacuum. So it’s important that risks which could lead to controversy are openly recognised, and transparently and proactively managed.
.png)
Key findings
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 if people feel they don’t have any control over data about them. People’s options for consent or dissent (for example, via the national opt-out) often aren’t mentioned.
A note on methodology
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.
Download the report
You can download the report here. Like most of our content, it's available on a CC-BY licence.
We’re really keen for others to be able to repeat this research themselves. So we’ve published the full methodology, including the search strings in the report too.
If you’re interested in learning more or talking to the team about this work, do get in touch at hello@understandingpatientdata.org.uk.
Learn more
If you found this page helpful, you may be interested in this video about how to communicate the way patient data is used. Grace talks through some tips and points to some more resources to help you.