By Emily Jesper-Mir and Rebecca Asher, who share the role of Strategy and Engagement Manager at Understanding Patient Data. 

We’re looking for a community research agency, organisation, or partnership to work with us on a qualitative engagement project with Black and South Asian members of the public. This is an important piece of work for Understanding Patient Data, that we hope will develop rich and timely insights into people’s perceptions of health data use.  

Why now?

The Covid pandemic has seen poorer health outcomes for Black and South Asian people, drawing attention to existing health inequalities. It has also exposed the frequent gaps in patient health records on ethnicity, as well as on clinical information and social determinants of health, such as blood pressure and smoking status. As a result, there is now a policy focus on collecting more patient ethnicity data to deliver more equitable outcomes and vaccination coverage during the pandemic. This also has the potential to improve future health research and planning, for example, to address wider health inequalities and tailor services.  

But it is unrealistic to expect lasting change without examining the reasons behind data inaccuracy and incompleteness for Black and South Asian people. These reasons are likely to include structural racism, lack of training, mistrust and the perception that data collection doesn't have a clear benefit. These issues—and how to address them—can only be meaningfully explored through public engagement, led by people with strong connections within Black and South Asian communities.  

About the project   

This is a multi-stage public engagement project to learn from members of the public and healthcare professionals about the barriers to health data collection, and to co-create resources to support improvement.  In scoping this work, we’ve spoken to local charities, academics, clinicians and community researchers - we’re grateful for their invaluable advice and critique. 

We are now looking for an organisation—or a partnership—to work with us on the first stage of this project. The organisation(s) must have deep connections in the range of communities that we want to engage with, and will plan and deliver public engagement: 

  • To explore Black and South Asian peoples’ views on health data collection and use: including why health records are often incomplete or incorrect and what aspects of data collection and use matter to them. 
  • To understand what it means to be represented: peoples’ perceptions of benefits or risks when it comes to being included or not included in health data collection. 
  • To learn about the questions, concerns and aspirations that people from Black and South Asian backgrounds have about the collection and use of data in their health records. 

You can read the full request for proposals here. The deadline to submit an expression of interest for this project is 1pm on the 9th of March.  

Insights from this first phase of the project will shape the practical resources developed with Black and South Asian people and healthcare professionals in the next phase. We can only do this well by listening first. 

Our hopes for this work 

We expect that this project will reveal concerns, questions and insights about what it means to be represented or not represented in health data, and the structural and cultural context to data use. We will ensure this informs our own understanding of people’s experiences and future Understanding Patient Data work beyond this project. We are committed to sharing insights from members of the public who participate with policymakers and NHS decision makers who have the power to make real change.  

We’ve tried to leave scope in the request for proposals for organisations to bring their own ethos, expertise and creativity to the project. We are looking forward to seeing the range of ideas and approaches we receive. If you have any questions about a proposal or this project more generally, it'd be great to hear from you. You can email us (Rebecca and Emily) at engagement@understandingpatientdata.org.uk.