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

We’re kicking-off the next stage of our work to understand the barriers to health data collection and develop resources to support improvement. This stage will be delivered by Liberating Knowledge, led by Natalie Creary and her team and will build on the earlier public engagement. 

What we’ve learnt so far  

Last month we published findings from engagement with Black and South Asian members of the public about their views and experiences of health data collection and use. This work was carried out by ClearView Research and included community researchers conducting in-depth conversations in their communities across the UK.  

The findings showed that:  

  • 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.  

What’s happening next 

Liberating Knowledge is a specialist research agency with deep connections to the professional and public communities we are engaging in this project (follow their new Twitter account here!).  

Liberating Knowledge will: 

  • Engage with healthcare staff who are responsible for collecting patient health data, to hear what they think contributes to limited collection or poor-quality data, what good practice does exist already and ideas for improvements.    
  • Conduct a survey with Black and South Asian members of the public to complement the qualitative engagement work and gain representative insights.   

We will continue to be advised by our expert advisory group, made up of clinicians, service providers, researchers and campaigners.  We look forward to publishing Liberating Knowledge’s findings in the autumn.  

In the face of grave health inequalities and gaps in patient health records, we hope this work will give analysts and decision makers a chance to reflect on the views and needs of Black and South Asian people and their communities. We want to inform a future where communities and individuals are thoughtfully involved in shaping planning and research that uses patient data, in a way that works for them.  

Exactly how we do this will depend upon what we learn from the engagement and survey phases of the project. We currently envisage working with members of the public and healthcare professionals to co-create ‘best practice’ resources. We hope these resources will support open and honest conversations about health data. 

Get involved 

We’d love to hear from organisations that could support this stage of the project. If you would like more information about how to take part, write to us at: engagement@understandingpatientdata.org.uk.