Members of the public are the most important part of health research. Researchers may have the knowledge and experience to develop human studies on health-related questions, but researchers can’t, and shouldn’t, do this research alone.

Our Patient and Public Involvement (PPI) panel members in the research lab.

What is Patient and Public Involvement?

Patient and Public Involvement means that we collaborate with members of the public when designing our human studies, so that everyone can benefit from this research. Our science is designed with the public in mind, rather than for or about them.

The Patient and Public Involvement (PPI) group at the Quadram Institute is a diverse panel of individuals with different lived experiences and backgrounds. One member is a Diversity, Equity and Inclusion consultant, another worked in the communications sector, while others have personal health journeys that have led them to get involved.

The PPI group works with our human studies team to review study proposals, participant information sheets – which detail studies and what’s needed from participants – as well as promotional social media and website content.

Patient and public involvement in research is nothing new. During a World Health Organisation meeting in 1978 in Almaty, Kazakhstan, it was declared that people have both the right and duty to participate individually and collectively in the design, planning, and delivery of their health care.

We talk to five members of the PPI panel about why collaboration between scientists, patients and the public is important in human research now more than ever.

Improve representation in health research

Everyone has a different reason for getting involved in research. For PPI panel member Ruth Ajayi, it’s about improving representation in human studies. They want to ensure that “people from marginalised communities, like myself, are visible and represented in this space”.

“I’m passionate about PPI and enjoy working with organisations to co-design care that is inclusive and effective for everyone. We need to remember that patients and the public don’t fit into nice little boxes that you can dress up with pretty bows. We are complex and messy and that needs to be considered in any research,” reiterates Ruth.

Marginalised communities can be impacted differently by health conditions. For example, individuals with darker skin are more prone to vitamin D deficiency due to higher melanin in the skin. At the same time, marginalised communities are less likely to be represented in human studies, meaning that study results may not benefit them.

Excluding groups in research does everyone a disservice. Patient and public involvement means that everyone is represented in human studies.

Have a positive impact on peoples’ health

Finding ways to treat illness and tackle global health issues is key to making a difference in someone’s life. To achieve this real-world impact, human studies must be designed with impact in mind.

“As we are living in an age of accelerated technological change in the field of medical study, I like the emphasis of prevention that the institute leans into,” reflects one panel member.

This is something the PPI group keep in mind when reviewing study proposals and information sheets, to ensure research is relevant and of high quality. “I enjoy the process of looking at the various study plans and their approach and methods”, they add.

Another panel member has a different perspective on research impact. “I have an interest in the economics from the research question through to translation to the bedside, and the ease with which research becomes national practice for patient benefit,” they explain.

All perspectives matter and help shape good quality and relevant human studies.

Communicate better with the public

PPI panel member Alex Marsh has had a career in communications. They spent their time understanding things outside their specialism and articulating them to a lay audience.

“Joining the panel seemed like a natural way of using my communications experience whilst doing something a bit different,” they add.

The PPI panel helps our human studies team produce clear, user-friendly participant information sheets as well as promotional social media and web content. This means that we can reach and encourage more people to make a difference and take part in research.

Only two out of five of our PPI group have previous experience working on PPI in research and none have a science-focused background. It’s this mix that shapes accessible research.

“I feel that I am able to contribute by ensuring that the material for the public and the patients is as easy to understand as possible,” summarises another PPI member.

Communicating with the public also means making the process of taking part in research as easy as possible.

“One question we are always consulted upon at an early stage is: would this project ask too much of the participants? Would it inconvenience them unreasonably? All of us are extremely quick to speak out if so. On top of that, the study documentation is always totally clear that you can change your mind and withdraw at any time,” explains Alex.

A positive experience for everyone involved

While patient and public involvement helps researchers run better human studies, the experience is similarly rewarding for PPI members themselves.

“At the beginning, I was a little nervous because I had a lot of comments, suggestions and recommended changes. However, the team were incredibly open and welcoming, and they took all of my feedback on board. It made me feel that my contributions were truly valued,” says Ruth.

Finally, PPI provides a way to “learn a lot about new areas of science and help in a small way,” concludes a panel member.

You can take part in research here at the Quadram Institute by joining our online participant database.