The Understanding Patient Data team has almost doubled in size in the last few months. So we thought we’d share a bit more with our friends and partners about who we are, what we do and how we’ve changed. 

Making the way patient data is used more trustworthy 

Understanding Patient Data exists to make the way patient data is used more visible, understandable and trustworthy. We believe that the use of patient data for research and planning can help improve health and care for everyone, but only if it’s done in a way that ensures people can trust the systems and organisations involved.  

The power and potential of data has become particularly clear during the covid-19 pandemic, but so too have the risks. And increasing interest in AI and machine learning in healthcare creates both exciting opportunities and the potential for unintended harms. 

Some people are understandably concerned about the idea that patient data can be used for purposes beyond care. Especially as data from health records can be used without people’s consent (although with lots of safeguards in place).  Information about our health feels intensely personal and people have concerns about privacy, security and commercial access to health data. Those collecting and using patient data must demonstrate that they are trustworthy, and that data will be used in a way that’s safe, fair and that benefits the health system and patients above all else. 

Being trustworthy will vary in different contexts, but often includes things like: good governance and clear accountability, being open and transparent about how data is used, and involving people in decisions and making sure their views are taken seriously.  

How we work 

Embedding trustworthy data use into health, care and research is an ambitious goal for our small team. And we know it’s not something we can achieve alone, which is why working with others is so important to us. There are three main kinds of work we do, a lot of which happens through partnerships and collaboration: 

  1. Research and engagement: to understand people’s views, expectations and concerns about how patient data is used, with a growing focus on systemically oppressed groups.  

  1. Advocacy: to encourage those making decisions about patient data to establish good governance, to be open, to involve people and to take on board people’s questions and concerns. 

  1. Communication: to find new ways to communicate how patient data is used and create accessible information resources for other organisations and data initiatives. 

Who’s joined us 

Back in July, Harri Weeks joined the team as Partnerships and Community Manager. She has a background in building relationships across the health and care system, government, and the voluntary and community sectors to address health inequalities. Harri will be developing partnerships and supporting the growth of a community of organisations interested in patient data. Through these partnerships we will develop projects which will help us to achieve our aims and ensure our learning is available to those setting the rules and communicating about patient data.  

Last month, Rebecca Asher and Emily Jesper-Mir joined us as our Strategy and Engagement Managers. They are here to deepen our understanding of what people think about their health data being collected and used: their worries, hopes, expectations and questions. Armed with this understanding, UPD wants to ensure that patients’ voices – and the public interest – are at the heart of policy and practice on the ground. Rebecca and Emily will prioritise engagement projects involving people from a diverse range of backgrounds, as well as creative and inclusive ways to have those conversations. 

Keep in touch 

We’re a friendly bunch, so if you’re working in this space and thinking about some of the issues I’ve touched on here, do get in touch. You can write to us at hello@understandingpatientdata.org.uk.