By Rebecca Asher and Emily Jesper-Mir, Strategy and Engagement Managers.

“I’m comfortable with sharing my data... but I don’t know how much faith I have in the system or… how much it’s going to reach and make a difference to the people who are in most need.”  

“Sometimes I am reluctant about disclosing my ethnicity and gender for obvious reasons like being seen as a Black woman, so I’m supposed to be “strong” even when I am unwell and clearly weak.” 

“I actually see myself as a British Bangladeshi...So, you know, it’s quite strange when they don’t have the option of putting the British-Bangladeshi on there.”

These reflections from Black and South Asian members of the public are among the many rich insights gathered during our collaboration with ClearView Research. The team at ClearView spoke to Black and South Asian people around the UK about their views on the collection and use of health data. We are publishing their report today. 

Why this research? 

Understanding Patient Data prioritised learning more about the views of Black and South Asian people when it comes to sharing health data because of the health disparities they experience, as mortality rates from Covid-19 starkly highlighted. Research into health outcomes during the pandemic also exposed the frequent gaps in patient health records on ethnicity, as well as on 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.   

That’s why we worked with ClearView Research who, through community research and focus groups, heard from Black and South Asian members of the public about their thoughts on health data collection and use.

The findings 

As the comments above demonstrate, ClearView’s findings are wide ranging and hard hitting. Themes that came through strongly include: 

  • Many Black and South Asian people have low levels of trust in the NHS and are concerned about how their data will be protected 
  • They believe that data can be used to improve health outcomes in their communities, but they do not see this happening in reality 
  • Indeed, these communities have had negative experiences of the healthcare system and fear that sharing their data will lead to racial discrimination and poorer health outcomes 
  • The current ‘tick box’ options are inadequate when it comes to being asked for information on their race and ethnicity 
  • People want to be informed about how their data is influencing research, design and planning of healthcare services; and have the opportunity to shape plans themselves. 

In response, ClearView have called for: 

  • Resources and training for healthcare workers to support better conversations with Black and South Asian people about patient data and what it is used for 
  • Research to find a more inclusive method to collect information on identity, including race and ethnicity 
  • Health data to be used to improve representation in datasets and for research into conditions that disproportionately affect people from Black and South Asian backgrounds. 

Find out more 

The complete findings and all ClearView’s recommendations can be found in the full report. There is also a shorter, summary report available too. 

This was a qualitative piece of engagement work, so not statistically significant or representative. However, Clearview spoke to a wide range of people across different age groups, areas of the UK, occupations and ethnic backgrounds and had many illuminating conversations. As you would expect, there was not unanimous agreement on every issue but the themes that Clearview identified came through strongly. The views and experiences highlighted in the research are a powerful reminder that wider ethnic inequalities in health services will shape both the collection and use of patient data. This video features the ClearView team, community researchers and research participants discussing the project and its findings.


What next? 

UPD is now commissioning qualitative engagement with healthcare staff who collect patient data. We want to hear what they think contributes to limited collection or poor-quality data, what good practice exists already and ideas for improvements. We will also commission a quantitative survey with Black and South Asian members of the public to complement ClearView's engagement work.   

In line with ClearView’s recommendations, we plan to then collaborate with members of the public and health care workers to produce ‘best practice’ resources for use by staff on the ground. We want the resources to support open and honest conversations about health data and how it’s used.  

We are discussing the findings on race and ethnicity recording with our colleagues in the digital technology team in Data for Science and Health here at Wellcome. They are already collaborating with the Office for National Statistics and Race Equality Foundation on research to improve the quality of collection, analysis, and usability of ethnicity data in health and social care.

And we will also share the findings with policy makers, NHS leaders and professional bodies, as we press the case for making the way patient data is used more trustworthy.

We are grateful to ClearView for their commitment to the project, and to the community researchers and participants they worked with for their interest in the research and the time they gave to it. We look forward to building on their work as we advocate for better engagement with the public, so that people can feel confident that sharing their data improves research, planning and services – and ultimately benefits their communities.