Who Gets Involved in Research—and Who Gets Left Out?

Result sharing from the UK PRP Survey

In the UK, Patient and Public Involvement (PPI) in research is a vital part of shaping studies so that they reflect real-world patient experiences. But, if you have taken part in a research project as a person with lived experience, as patient expert or Patient Research Partner (PRP) have you ever noticed that when it comes to who steps forward as lay contributors, it’s often women?

Earlier this week I shared a post on instagram to see if people could guess how many of the UK Rheumatology Patient Research Partner survey responders were Male vs Female, giving 3 possible answers: (a) 24% + 76% (b) 45% + 55% or (c) 35% + 65%. The respondents nailed it with answer (a), which, at the very least, demonstrates that we, as patients, recognise this imbalance!

There are many possible reasons for this. It seems that women are still more likely to take on caring responsibilities, advocate for family health, and engage in voluntary roles. This may mean that they may also have more flexible working patterns that allow them to contribute. They may also be less restrained when it comes to talking about personal experiences. But this raises an important question: are we hearing from a diverse enough range of voices? If involvement opportunities aren’t accessible due to work schedules, financial barriers, or cultural expectations, we risk shaping research with input and insights from only a subset of those affected.

At the same time, if we look at how medicines are developed, a different imbalance emerges. Historically, Phase 1 clinical trials—the first stage of testing new drugs in humans—were conducted mainly on young, healthy men. This practice was based on outdated concerns that hormonal fluctuations in women would “complicate” results and fears of exposing women of childbearing potential to risk.

Regulations have since changed. The UK Medicines and Healthcare products Regulatory Agency (MHRA) and international guidelines now encourage greater diversity in clinical trials. The NIHR (National Institute for Health and Care Research) also promotes inclusive research, ensuring underrepresented groups—including women—are considered. But gaps remain. Some early-stage trials still underrepresent women, and much of the medicine we use today was originally developed based on research conducted largely on male bodies.

So, where does this leave us? A system where women are often highly involved in shaping research through PPI, yet many treatments were historically designed and tested around men. And, as yet, not enough gender specific research into the efficacy of existing available drugs?

If we want truly representative, inclusive research and treatments, we need to get involved, make sure all sides are covered —ensuring that research involvement opportunities includes a diverse range of people, while also pushing for early-stage trials and drug development that reflect the full population.

If you are a researcher reading this: have you noticed these imbalances in your own experience with research?

What do you think needs to change in order to attract more diverse PPI?

Join the conversation and comment below..