By Grace Annan-Callcott, Program Adviser

Last year was a big one for Understanding Patient Data. Between kicking off a bunch of new projects, patient data hitting the headlines due to the GPDPR programme, and some major changes to our team and funding arrangements—a lot happened.  

2022 is the last year Understanding Patient Data will be hosted at Wellcome. In that time, there’s a lot we want to achieve. Here’s a quick rundown of what’s on the cards.  

Developing new resources on pseudonymisation and big datasets 

Large-scale datasets are often vital in the development of new treatments and diagnostics, but it can be hard to explain where the data comes from and whether individuals can be identified. We’re working on new public resources that explain the process of pseudonymisation and why big datasets are crucial for research. We’ve commissioned Open Creative Communications to cocreate the resources with members of the public, so keep an eye out for publication in the summer. 

Commissioning an easy-read guide about the use of data for health research 

It’s important that information about how health data is used is accessible to as many people as possible. So we’re working with Thinklusive to develop an easy-read guide that explains how patient data is collected and used, and the role of large datasets in research. Thinklusive is co-creating the guide in partnership with people with learning disabilities. We plan to launch it in the Spring. 

Engagement with Black and South Asian people on equitable data collection 

We’ve commissioned a multi-stage project to learn more about the views and experiences of Black and South Asian members of the public when it comes to health data collection and use. ClearView Research is leading the public engagement, using a mix of community research and focus group discussions with people around the UK. Their work will be complemented by a quantitative survey, as well as conversations with healthcare workers.  Once we have a better understanding of people’s views, we will work with members of the public and healthcare professionals to cocreate ‘best practice’ resources for use by staff on the ground. These resources will be produced by the end of the year, with the aim of supporting open conversations about health data and why it’s used.   

Explaining the use of patient data in health charities’ guidance 

We’re working with a community of practice of eight health charities to test out some of the findings from the ‘How to talk about data without talking about data’ project. The initial research found that people are more interested in how data is used when it helps them learn about their own health. Health charities offer a wealth of information about health conditions, so we’re helping them update their health information to explain the role of patient data in their guidance and testing out whether this can help people learn about how health data is used. Rocket Science is running an evaluation, and we expect the results in May. We have also been speaking to NHS Digital, NHSX and the teams in the NHS that run screening programmes, to suggest that they include similar explanations in their content. We will continue to support these conversations and decisions throughout 2022. 

Research on primary care professional’s attitudes to data use 

Healthcare professionals collect a lot of patient data and are often the ones who have conversations with patients about it too. So, we want to know their views about how data is collected, accessed and used, so that this can inform changes to process and practice that might be made. We’re working with the Royal College of General Practitioners (RCGP), and have commissioned Mott Macdonald to work on a project to learn about primary healthcare professionals’ views and expectations around the use of patient data. Towards the end of January we’ll be publishing the findings. 

Finding a home for our resources & celebrating UPD’s legacy 

As this is UPD's last year at Wellcome, from Spring we’ll be focusing on findings new homes for our key resources. We’re proud of the role UPD has played in creating evidence, advocating for meaningful public involvement and defining what trustworthy use of patient data means. We reckon that’s worth celebrating. We’re thinking about how to mark the end of the programme (we'll probably do something in the Autumn), so keep an eye out for news about that.  

Keep in touch 

Do get in touch if you want to discuss anything we’re working on at hello@understandingpatientdata.org.uk.