The importance of inclusivity and PPI: Emma Lidington’s experiences in the DISTINCT project

14 May 2026

By Dr Hannah Drysdale and Dr Emma Lidington (Wolfson Institute of Population Health)

There’s been a strong push to make health research more inclusive and representative. Patient and Public Involvement (PPI) has moved from a peripheral consideration to a central part of research. We’ve seen progress in involving patients in the development of our trials, to make sure our research better serves everyone.

But, you can’t improve what you’re not measuring. Many UK trials fail to collect participant demographic data in meaningful ways. Without information about who is taking part, and who isn’t, we can’t know whether studies are representative. We risk producing solutions that don’t work for everyone.

As co-chair of the Equality, Diversity, and Inclusion group at the Cancer Prevention Trials Unit (CPTU) at Queen Mary University of London (Cancer Prevention Trials Unit), I decided to audit  our practices to see whether our trials were as representative as I hoped. At the same time, I joined the Trials Methodology and Research Partnership (TMRP) Trial Conduct Working Group and met Rebecca Lewis. She had co-led a similar audit at The Institute of Cancer Research’s (ICR) Clinical Trials and Statistics Unit. We realised there was scope for improvement, so we decided to team up. The DISTINCT project emerged, and we worked together to develop a set of demographic questions to increase inclusivity in research. Our goals were simple: identify which demographic items should be routinely collected, and design questions and guidance that participants understood.

In 2024 we consulted with the public about collecting demographic data for health research. We ran discussion groups on education and employment; sexual orientation and gender identity; ethnicity, language and religion; and health, disability and unpaid care. These conversations refined wording and guidance, led to the removal of three questions and the revision of ten, and produced a final set of 15 questions covering 12 characteristics: Age, Sex, Gender, Trans status, Sexual orientation, Ethnicity, Religion, Language, Education, Employment status, Disability and long‑term health conditions, Caring responsibilities.

The DISTINCT question set is now available to non‑commercial UK researchers as part of a pilot study. We aim to expand its use, gather feedback, and establish an agreed core set of questions so researchers can monitor recruitment and representativeness.

PPI

PPI was central to DISTINCT from the outset. As researchers, we often get caught up in our own way of thinking, so it was valuable to bring in fresh perspectives.

Two patient partners, Andy and Natasha, joined the core DISTINCT team at project conception and were involved in every stage of the process: selecting and reviewing questions, shaping the discussion guide, and adapting questions based on participant feedback. But their biggest contribution was in co-facilitation. Their presence in the discussion groups gave them first‑hand insight into participants’ reactions, which proved invaluable.

Recruitment

We put a lot of thought into recruitment. We worked with PPI networks focused on involving people new to research (e.g., King’s PPI Group for People from Diverse Backgrounds and our CPTU PPI Pool) and contacted advocacy groups and charities (e.g. OUTpatients). It worked well - we received 60 expressions of interest from people with and without research experience.

Due to limited funding and short project timelines, we had to cap participants to 29. We also faced a challenge in confirming that our group was truly representative. We avoided pre-assigning people to discussion groups via a questionnaire to prevent bias (since the project was about how we ask those questions!). Instead, participants self-described in free text responses. Among respondents, the group was relatively diverse (35% came from a minority ethnic group, 17% identified as LGBTQIA+, 24% were carers, and 38% had a disability/health condition).

Discussion groups flagged issues we hadn’t anticipated and presented other challenges. For example, some participants questioned the project’s premise which pushed us to clarify our language. We also found that in some groups dominant voices overshadowed quieter ones. To address this, we followed up with quieter participants in one-to-one interviews, yielding richer insights. We also collected feedback by email – underscoring the importance of offering multiple ways of participation.

This process showed us that working towards inclusivity isn’t about understanding who is represented but how we include people in research.

What’s next?

Next, we will evaluate how trial teams have implemented the question set – whether it was integrated into consent forms, used as a standalone questionnaire, or collected alongside other data.

DISTINCT was the first project I’ve worked on where PPI contributors genuinely felt like part of the team from inception. Andy and Natasha brought their lived experiences and skills, and it has changed the way I think about research design and inclusivity. DISTINCT has shown me what’s possible when we start with collaboration - inclusion begins with who’s in the room when decisions are made.