Written by Rebecca Asher & Emily Jesper-Mir, Strategy & Engagement Managers. 

Earlier this year we wrote about our plans to engage with Black and South Asian people on equitable data collection. This work is now underway, so it’s a good time to give an update on how the project is progressing and what we want it to achieve. 

Why this project, and why now? 

There has been lots of recent research into what the public thinks about the collection and use of health data, including by us here at Understanding Patient Data. We’ve carried out surveys, held roundtables and organised citizens juries to find out what people think about health data being used by organisations outside the NHS. We’ve also worked with members of the public on the best words to use when discussing patient data and the best moments to have those conversations. All this research means we have good evidence about people's expectations, hopes and concerns when it comes to trustworthy use of data, and how to talk about data.  

However, most of this research has been with the general public, using a nationally representative sample for the whole of the UK population. We’re missing evidence on how people’s views vary and potential demographic differences. It is crucial to develop a more granular understanding of what people from specific groups within the UK think about health data use because otherwise important issues might be missed. If we don’t know what matters to people from certain groups, how can their expectations, concerns and ambitions be addressed by policy makers and heath care staff?  

We are prioritising learning more about the views of Black and South Asian people because of the health disparities they experience, as starkly highlighted during the pandemic. Research into health outcomes during the pandemic has also exposed the frequent gaps in patient health records on ethnicity, as well as important clinical information and social determinants of health. Better research and planning to tackle health inequalities requires better health data. And we can’t expect better data without listening to the experiences, expectations and concerns of the people who provide that data in the first place.  

It’s all in the planning 

When we last wrote about this project, we were looking for an organisation with deep connections in the communities we are engaging with to deliver public engagement. We received some very strong proposals and are pleased to be collaborating with ClearView Research on this work.  

We recently had a kickoff meeting to talk through their plans to elicit qualitative insights using a mix of peer research community interviews and focus group discussions with people around the UK. The peer researchers will be recruited into paid roles and trained specifically for this project and will co-create the focus group sessions. They will also carry out their own interviews and analysis and ‘sense check’ the overall findings. We are all ears for what people have to say.  

As well as working with ClearView, we are taking soundings from an advisory group that we have set up, that will provide us with a range of expert perspectives in this area. The group is made up of clinicians, service providers, researchers and campaigners. Collectively they perform a vital ‘critical friend’ role and will challenge and support us along the way. The members are: 

  • Hannah Atherton, Senior Insight Account Manager, NHS England, and Clare Enston, Head of Insight and Feedback, NHS England 
  • Owen Chinembiri, Senior Implementation Lead, NHS Race and Health Observatory 
  • Dharmi Kapadia, Lecturer in Sociology, Manchester University 
  • Mavis Machirori, Senior Researcher, Ada Lovelace Institute 
  • Rohini Mathur, Assistant Professor of Epidemiology, London School of Hygiene and Tropical Medicine 
  • Winston Morgan, Reader in Toxicology and Clinical Biochemistry, Medicines Research Group, University of East London 
  • Parth Patel, research fellow at IPPR & UCL Institute of Health Information, junior doctor 
  • Peter Short, Clinical Lead GP Data for Planning and Research, NHS Digital. 

We are grateful to everyone in the group for giving their time to this project. 

The group first met ahead of the kickoff with ClearView and gave us invaluable advice on the range of participants to involve in engagement sessions and the most worthwhile areas to explore. We also discussed – crucially – how to share the findings in the most effective way possible, to reach people who can make a difference.  

Making it count  

The conversations with Black and South Asian people will carry through to early next year. Once we have a better understanding of people’s views, we will work with members of the public and health care staff to cocreate ‘best practice’ resources for use by staff on the ground, to support better transparency about health data and why it’s used. It’s important to us that we support open and honest conversations about data that give people the full picture, rather than seeking to persuade.  

We will then share our findings and the resources with policy makers, NHS leaders and professional bodies so they can use them to improve health policy, practice and training. And we will carry on the conversation with communities that we have worked with on this project. We hope people will be interested in the results – and what we are doing to ensure they make a difference.