By Rebecca Asher & Emily Jesper-Mir, who share the role of Strategy & Engagement Manager

Large-scale data sets are often used to develop new treatments and diagnostics. But it can be tricky to communicate where the data comes from and whether people can be identified. We want to do a better job. So we are looking for a supplier to collaborate with us on producing two new public guides that explain large-scale health data sets and pseudonymised patient data in a clear and balanced way. 

These guides are for the general public – they’re not technical resources for experts. So it is important that the supplier has a track record in tackling complex or contentious issues, and communicating them accurately and engagingly. The supplier will produce the resources through co-design with members of the public and collaborate with us on dissemination. We anticipate the work will run from January to June 2022. The deadline for proposals is 5pm on 16 November. 

Meeting a public – and professional – need 

The idea for this project was developed in partnership with the OpenSAFELY team, who are grantees of our wider department in Wellcome: Data for Science and Health. During the Covid-19 pandemic, rapid research using the OpenSAFELY platform provided insights to improve healthcare decisions nationally, based on data from over 17 million primary care records. There are many other initiatives that seek to use data at scale.  

But there has been concern from the public and privacy groups about the use of patient data, particularly in relation to General Practice Data for Planning and Research. We know that members of the public ask thoughtful questions about how large-scale data platforms operate and the risks, safeguards and trade offs. A particular point of confusion relates to how data is processed and stored as ‘pseudonymised’ data.  To support a well-informed public debate among patients, commentators and policy makers – as well as health care staff and researchers themselves – we need high-quality, accessible guides that address people’s questions and concerns. Although stemming from discussions with OpenSAFELY specifically, these resources would be generally applicable to all large-scale health data sets. 

Ahead of launching this project, we held a scoping workshop with a group of experts – researchers, clinicians, policy and engagement specialists and campaigners. They were very supportive of the idea and helped us refine the areas to cover in each of the guides. These areas are set out in the full request for proposals. We’ve also tried to leave scope for organisations to bring their own expertise and creativity to the project. 

Our ambition for the project 

We want these resources to be widely taken up by health care professionals, charities and the NHS at a regional level. Through their dissemination we aim to equip members of the public with an understanding of large-scale datasets and pseudonymised data. We also want to develop people’s understanding of the right questions to ask to assess whether the use and management of a large-scale data set is being carried out in a responsible way. As always, UPD’s role is to give accessible, balanced information - so people can come to their own, informed opinion – rather than seeking to persuade.  

Get in touch 

We are pleased to be launching the request for proposals for this valuable project. We are keen to talk it through with potential suppliers and answer any questions, so we are holding an informal supplier event on 11 November. Just drop us a line if you would like to come along: engagement@understandingpatientdata.org.uk. The deadline for full proposals is 5pm on 16 November.

We are looking forward to seeing the range of ideas and approaches we receive.