By Grace Annan-Callcott, Communications Officer. 

The new year is often a time to reset, develop new goals and focus on plans for the year ahead - but this year that's harder than most. The UK is going through an incredibly difficult period in this pandemic and we know everyone working in the health system is under a huge amount of pressure. Lots of our colleagues and partners will be involved in the response to Covid-19 and we want to say how grateful we are to you. 

Last year demonstrated how critical the trustworthy use of data is for managing the pandemic, from understanding how the virus affects different groups to identifying lifesaving treatments. So with our team now at full strength, we’re continuing our work to make the way health data is used more visible, understandable and trustworthy. Here’s a quick rundown of what we’re doing at the moment.

Live projects

Analysing how health data stories are covered in the media 

We’re working on a short media analysis project with Portland Communications, to map how stories about health data have been covered in the UK media over the past 18 months. Our aim is to understand how different outlets cover the issues, what narratives or themes get the most cut through to the public and how media coverage has changed during the Covid-19 pandemic. We’ll publish our findings in the open, as we believe it will be useful for others too – keep a look out in a few weeks' time.  

Defining the use of data for public benefit 

We’ve co-commissioned a public dialogue project with the National Data Guardian and Sciencewise, to explore how to define and assess ‘public benefit’ for the use of health and care data. The findings will be used to develop new, more detailed NDG guidance on how to decide if data projects meet public benefit criteria. The project is due to wrap up in the spring, with the new guidance published later this year.  

Putting ‘Foundations of Fairness’ into practice 

We’re continuing our work to ensure the insights from our Foundations of Fairness research are embedded in national policy. This includes working closely with the new NHSX Centre for Improving Data Collaboration as they develop their approach and strategy. Our evaluation of the original research is continuing too – thanks again to everyone who’s given us feedback so far.  

Learning about health care professionals’ attitudes to the use of health data 

We’re working with the Royal College of General Practitioners (RCGP) on a research project to learn about primary health care professionals’ views and expectations around the use of patient data. This question is especially important given the crucial role data has played in managing Covid-19. It's a 12-month project, which allows us to be sensitive to the current extreme pressure on the health system. You can read a bit more in this news post.  

Projects in development 

Understanding gaps in health records 

Covid-19 disproportionately affects Black and South Asian ethnic groups, so analysis on why that is and how outcomes might be improved is vital. But health records often lack information about ethnicity, and policy solutions to this usually focus on quick fixes to just gather more data. We think it’s important to listen to the views of people from the communities affected to help us understand why this data is currently not being collected and identify more effective solutions. We will commission public engagement with people from Black and South Asian ethnic backgrounds, to explore the factors that contribute to limited completion of health records and what aspects of data collection and use really matter to people. We want to say a big thanks to all the experts in this area that have given their input on this work so far. 

Explaining the data behind health information  

Our ‘How to talk about data without talking about data’ research found that people are more interested in how data is used when it helps them learn about their own health condition. Health charities offer a wealth of information about health conditions, so we’re planning a project to test whether explaining the data behind the guidance could help people learn about how health data is used.

Keep in touch 

As well as working on our own projects, we’re keeping an eye on national policy developments and the ways data is being used in the response to Covid-19. We’re a collaborative bunch, so do get in touch if you want to discuss anything we’re working on at hello@understandingpatientdata.org.uk.