Public contributor spotlight: Sienna’s take

At the NIHR Biomedical Research Centre: Birmingham, we work with patient and public contributors across a range of health conditions. But who are they, and what is it like to get involved in research as a member of the public? To find out, read this piece authored by our public contributor, Sienna–Mae Yates.

A few years ago, if someone had told me that I would one day be sitting on research committees, reviewing funding applications and helping researchers think differently about their work, I probably wouldn’t have believed them.

I don’t have a traditional academic or research background. My interest in health and care research grew from my own experiences of using health services, supporting family and friends through different health conditions, and gradually realising how important it is that research is shaped by the people it is ultimately intended to help.

I am autistic and have ADHD, and for a long time I didn’t necessarily see my experiences or perspectives as something that could be useful to research. I can find new situations and groups daunting, and I don’t always find it easy to speak up straight away. Patient and public involvement and engagement (PPIE) has helped me realise that there are many different ways to contribute and that you don’t have to be the loudest person in the room to have something valuable to say.

You don’t have to be the loudest person in the room to have something valuable to say.

From health data to public involvement

One area I’ve become particularly interested in is how health data can be used safely and responsibly to improve care. I was already involved with the SAIL (Secure Anonymised Information Linkage) Databank Consumer Panel in Wales when Claire Newman, Public Engagement Officer for the panel, made me aware of an opportunity to join PIONEER’s Public Advisory Group through the Health Data Research (HDR) UK Medicines Driver Programme focusing on medicines in acute and chronic care.

Through the group, I’ve been able to contribute a public perspective to work around acute and emergency care, including research priorities, whether projects will benefit patients and how information about research is communicated. I’ve also been able to review written, audio and visual materials to help make sure they are clear and understandable.

PIONEER’s work connects with the NIHR Biomedical Research Centre: Birmingham, which has opened the door to further opportunities for me within the Birmingham research community. I’m now involved in the BRC: Birmingham’s PPIE Community of Practice, where people involved in PPIE share learning, develop ideas and resources and think about how involvement can be improved. I’ve also provided feedback on the updated HDR UK PPIE Strategy Toolkit.

Why accessible involvement matters

I’m based in Wales, so I’ve particularly appreciated that my location hasn’t been a barrier to becoming involved in Birmingham. Being able to contribute remotely makes a genuine difference. As someone who is autistic and has ADHD, travelling to unfamiliar places and attending everything face to face can create additional barriers. Online and hybrid opportunities allow me to focus much more on what I’m there to contribute rather than worrying about the practicalities of getting there.

Being able to contribute remotely makes a genuine difference.

Making a difference through lived experience

My wider involvement in research has grown considerably too. I’ve reviewed research proposals, participant information, questionnaires and study materials, taken part in advisory groups and workshops and helped teach future clinical psychologists about involving people meaningfully in research. I’ve also gone on to take up longer term roles, including becoming a Public Co-Lead for the Wales Centre for Primary and Emergency Care Research (PRIME), a Lead Public Contributor with Cardiff University’s School of Medicine, a member of the Health Data Research UK Public Advisory Board and an NIHR Efficacy and Mechanism Evaluation (EME) Programme Public Committee Member.

What I enjoy most, though, isn’t collecting roles or titles. It’s those moments when you can actually see that something has changed because members of the public were involved. Sometimes it’s suggesting that information is rewritten because it doesn’t make sense to someone who isn’t a researcher. Other times it’s asking whether a study is genuinely accessible, whether researchers are reaching the people most likely to be affected, or whether something that looks good on paper would actually work in everyday life.

I’ve learnt that good public involvement isn’t about simply agreeing with researchers. Part of our role is to ask questions that might otherwise be missed and to feel able to say when something doesn’t make sense.

Good public involvement isn’t about simply agreeing with researchers. Part of our role is to ask questions that might otherwise be missed.

Research has its own language and acronyms too, and when I first became involved, it could sometimes feel like everyone else understood something that I didn’t. I’ve learnt that asking someone to explain isn’t something to be embarrassed about. If I don’t understand something, there’s a good chance other people won’t either.

If I could give one piece of advice to somebody considering getting involved in research, it would be to recognise that you can contribute something worthwhile even without qualifications or specialist knowledge. You can learn as you go. Your experiences, questions and perspective are exactly what you are bringing to the table.

Your experiences, questions and perspective are exactly what you are bringing to the table.

I certainly didn’t expect my involvement to grow in the way that it has. But somewhere along the way I stopped thinking of myself as someone who was lucky to be invited into research spaces and started recognising that public contributors genuinely belong in them.

Are you also interested in getting involved in research? Explore how you can join our community of public contributors.