Project Patient and Public Involvement

Embedding Patient Partners

We recruited four Patient and Public Involvement and Engagement (PPIE) members from ethnically and socio-economically diverse backgrounds to join the steering committee of our project. These partners provided insight and helped guide the project, starting from our kick-off meeting in January 2022. They gave their voice on topics including study design and management.

PPI Focus Groups

Over the course of this project, we held three PPIE Focus groups with six to eight ethnically diverse public contributors from across the UK. These focus groups, facilitated by The Centre for Ethnic Health Research at the University of Leicester and OPEN ARMS here in NDORMS, discussed three key parts of the study:

1. Why ethnicity reporting may be incomplete in patient records, and how this could lead to biases in data and resulting healthcare tools.
2. Whether the existing ways of grouping ethnicity (like the six typically used in research, the 19 NHS codes and the 489 SNOMED-CT codes) are adequate
3. How could the classification of ethnicity data be improved?

The learning from our public contributors fed directly into our work, not only on this project, but on how we approach similar work across the lab.

An incredible example of this was a comment from a patient partner which challenged a very common part of research when using real-world health data: whenever data is missing, in this case, ethnicity data, algorithms would infer the ethnicity of a patient using the other data in their records.

Our public contributors pointed out that, while this might be a common practice, it risks reinforcing biases that already exist in healthcare research, and doesn't respect the choice of individuals who have records missing because they chose not to share their ethnicity data, rather than not having the opportunity to provide them.

Insights like these demonstrate why co-creation and incorporating patient and public partners into research is so crucial, especially when investigating topics like ethnicity: academic practices which could create or reinforce biases are sometimes so commonplace that their impacts aren't considered. We look forward to working alongside our partners to challenge these common practices to improve AI technologies and health data research.

The 'Be Proud of your ethnicity' campaign

While discussing the issue of incomplete ethnicity data, our public contributors suggested a valuable way to share the findings of this study and increase its impact for the public was to launch a campaign to encourage patients to provide their ethnicity data, and explain its importance for research. We launched the 'Be Proud of Your Ethnicity Campaign alongside The Centre for Ethnic Health Research, the British Heart Foundation Data Science Centre and use MY Data. We created campaign posters which were translated into Punjabi and Gujrati alongside English versions, and an infographic leaflet for the project, as well as a video (coming to this page soon!). Campaign materials Ethnicity, Data, Health Research poster - English Ethnicity, Data, Health Research poster - Punjabi   Ethnicity, Data, Health Research poster - Gujrati   Ethnicity, Data, Health Research Project infographic