PPI Team Wins HDR UK Grant to Champion Equity, Diversity and Inclusion in Health Data Research

Led by Dr Tracy Jackson, with Laura Gonzalez Rienda and Jean Balchin, alongside public co-leads Karen Mooney and Anna Grosse, the project will co-create an Equity, Diversity and Inclusion (EDI) Framework for the Driver Programme. 

This framework will help to ensure that the voices and experiences of people from a wide range of communities, especially those traditionally underrepresented in health research, shape how data-driven studies on inflammation and immunity are designed and conducted.

“PPI enhances the quality and relevance of our work, and ensures our research is grounded in the real-world experiences and needs of those it aims to benefit,” said Dr Jackson, Patient and Public Involvement Lead.

“This grant enables us to collaborate and build an inclusive EDI framework that incorporates the diverse perspectives of all community members, particularly those who have been underserved and underrepresented in healthcare research. By actively involving an inclusive panel of community members in creating our EDI Framework, we are taking significant steps toward making health data research truly accessible and representative.”

Beginning in November 2025, this year-long project will bring together a UK-wide EDI Public Involvement and Engagement (PIE) Panel of 10–15 members from diverse backgrounds, including those with lived experience of respiratory conditions such as asthma and COPD. 

Via online workshops, the panel will explore what EDI means to them, discuss barriers to inclusion, and identify practical steps to make research more accessible.

“In research, it's really important to include people from all walks of life to create meaningful and relevant change,”said Anna Grosse, public co-lead based in Edinburgh. “This project is a really exciting opportunity to bring together lived experiences and help to inform better EDI practices across the UK.”

Insights from these discussions will feed directly into the creation of an EDI Framework, complete with a commitment statement, clear roles and responsibilities, and measurable goals. 

The project will also develop and deliver EDI training and resources for researchers within the Driver Programme, focusing on respectful engagement, cultural humility, and trauma-informed approaches.

Public contributors will play an active role throughout, from co-facilitating workshops to co-authoring publications and delivering training. The team will also produce accessible materials, including an infographic and animation, to share their findings widely.

“I'm excited to work with researchers and communities to make public and patient participation in research more accessible, inclusive and relevant” said Karen Mooney, public co-lead based in Northern Ireland.

“Creating guidance on equality, diversity and inclusion for researchers, by working together with those directly impacted by the research, is crucial to ensuring that our findings are relevant, impactful and reflect the diverse needs and lived experiences of all patients we aim to serve,” said Laura Gonzalez Rienda, PPI Research and Operations Assistant. 

The resulting EDI Framework will be embedded into the Inflammation & Immunity Driver Programme’s long-term PPIE strategy, ensuring sustainable impact beyond the funding period. 

Learn more: From Standards to Impact: Embedding the Public Engagement in Data Research Initiative Good Practice Standards in Data for Research and Statistics