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

In recent months, we have been collaborating with ClearView Research on our equitable data collection project. Through community research and focus groups, ClearView has been hearing from Black and South Asian members of the public about their thoughts on health data collection and use.

We are prioritising learning more about the views of Black and South Asian people because of the health disparities they experience as mortality rates from Covid-19 starkly highlighted. 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. We are very grateful to all the members of the public who have participated in this research. 

Coming up next 

These conversations are the first step in a multi-stage public engagement project to learn from members of the public and healthcare professionals about the barriers to health data collection and co-create resources to support improvement. As well as working with expert suppliers, we are benefitting from advice and scrutiny from an independent advisory group made up of clinicians, service providers, researchers and campaigners 

ClearView’s work is about to wrap up. We know that they have had many rich discussions so we are looking forward to reading—and sharing—their full findings. Their report will be published in the next few weeks. 

We are now looking for a supplier to deliver the next two stages of the project, building on the insights from stage 1: 

  • Stage 2 : Qualitative engagement with healthcare staff who are responsible for collecting patient health data. We want to hear what they think contributes to limited collection or poor-quality data, what good practice does exist already and ideas for improvements.   
  • Stage 3: A survey with Black and South Asian members of the public to complement ClearView’s  engagement work and gain representative insights.   

What we are looking for 

For stages 2 and 3, we are seeking a supplier with a track record in qualitative and quantitative health research, with both: 

  • the networks and knowledge relating to health data to deliver small group engagement workshops with healthcare staff 
  • the expertise in quantitative research in this area, to devise and deliver a large-scale public survey with Black and South Asian people that builds on existing relevant survey insights.   

We are open to receiving collaborative bids, where organisations partner with each other to deliver this work.  We would like Stages 2 and 3 to be delivered in parallel over 4 months. You can read the full request for proposals here (please note this document was updated on the 15th February to include questions from suppliers). The deadline to submit a proposal for this project is 5pm on 21 February. If you think you can meet our requirements, please consider submitting a proposal. Or, if you know of a team or organisation who may be interested, do pass the information on. 

Feeling the benefit 

Once we have a better understanding of people’s views, we want to ensure that what we learn can help make a difference. Exactly how this is done will be shaped by what we hear, but currently we envisage working with members of the public and healthcare professionals to co-create ‘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 will also share our findings and the resources with policy makers, NHS leaders and professional bodies, who have the power to make real change.   

Please get in touch if you have any questions about this project. You can email us (Rebecca and Emily) at engagement@understandingpatientdata.org.uk. We are looking forward to receiving the proposals and getting started on the next phase of a project that we hope will benefit both healthcare staff and patients.