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Patients and the public bring invaluable lived experience to our work at 51������. Patient and Public Involvement and Engagement (PPIE) helps ensure that our research, processes, and resources reflect the needs of those they affect most.

By including and collaborating with patients, caregivers, and members of the public, we make health data research more relevant, inclusive, and impactful in the real world.

In October, we hosted our first in-person PPIE event — a space that brought together researchers, patient and public contributors, and PPIE professionals in one room. The event provided a unique opportunity to celebrate contributions, share learnings, spark new conversations, and explore the challenges and opportunities of embedding PPIE into the heart of health data research.

As a member of the 51������ Communications team, I had the chance to attend and be part of the exciting conversations happening throughout the day. It was inspiring to see first-hand how deeply valued public voices are within our research community — and how effectively they’re shaping the future of health data.

Co-producing meaningful events with public contributors

Public involvement isn’t just about seeking opinions — it’s about co-producing research that is meaningful, trustworthy, and rooted in the priorities of real people.

For me, one of the most powerful aspects of the day was hearing about how the event itself was co-designed not just for the community, but with them. By partnering with public contributors in the planning process, this enabled the agenda to better reflect their interests, questions, and lived experiences.

I invited two 51������ Voices members to share their own experience — one who helped plan the event and another who attended as a participant. Here’s what they had to say:

Tony’s experience: Planning the event

What was the most rewarding part of being involved in the event planning? Were there any surprises or things you hadn’t expected during the planning process?

The first thing to say is that the event planning was a long, detailed and inclusive process. It took place over ten��months and covered everything from speaker selection to the choice of venue, with accessibility for all being a top priority throughout. It was absolutely not tokenistic. The Event Planning Group was one team. There was no difference between 51������ Staff and PPIE members; we were all equal partners and able to give our opinions, suggestions and thoughts freely. These were also taken onboard and acted upon.

The most rewarding aspect of the event planning was that feeling of camaraderie and togetherness. At the end of the event, all of us (both in-person attendees and those online) could look back and say “together, we made that happen!“.

The most unexpected part for me was the ability to be ‘on stage’ on the day. Although, anybody who was there and/or knows me knew that I was more than ready and willing — “The Doctor was in The Venue” that day too.

Why do you think it’s important that patients and members of the public help shape events like this?

To be honest — and I can say this as a biomedical scientist too — scientists do get a lot of attention and opportunities to shine (some even get multiple TV series; I’m looking at fellow ‘Oldhamer’ Brian Cox!). But in medical science, they don’t have anything to share without the public’s input through clinical trials, etc. So, why shouldn’t the public be at those conferences and events too? Without the public, the science wouldn’t exist.

It’s vital that patients and the public also have a say in how their data and contributions are showcased, at all science events not just PPIE-centric ones. 51������ does a good job in reflecting the wants and needs of the public, patients and other contributors to the projects they fund and drive forward.

What would you say to someone who might be interested in getting involved in research, but is unsure if their voice can really make a difference?

Every contribution makes a difference. I started small with attending a few online groups and completing some survey-style clinical trials. Yes, it’s not all about giving blood or having your body scanned (although you can build-up to that, like I did!).

I’d also say look at research that you have a direct interest in. It might be that you’ve had a personal experience with a condition, or through family or friends. It doesn’t matter how or why you get involved, the important bit is to get involved. Don’t assume other people will do it for you.

Ask yourself one simple question each time a research opportunity arises:

“If not me, then why not me?”

If you can’t find a reasonable answer, then fill in that form or send that email to the research team. You won’t regret it and it could take you to places you never imagined. It took me to the House of Lords and that was only the ‘beginning’…

Caroline’s experience: Attending the event

What made you click ‘register’ and attend the event?

It felt like an honour to be asked to attend the event.�� It was called a “Celebration Event”, which felt like a positive recognition of the important contribution of public contributors in Health Data Research.�� It felt like it would be both a constructive opportunity to make connections with others across the research community, as well as an opportunity to improve insight of what’s happening across the research landscape and strengthen insight of public perspectives.

What stood out to you about the event? Was there a particular moment or topic that resonated with you most?

There was a wonderful atmosphere to the event which brought together many stakeholders from the research community and such a great opportunity to make new connections, as well as connecting with others that I’d previously only met virtually.�� It was a tangible affirmation of the priority of partnership with patients in Health Data Research and a great learning experience in hearing about some of the exciting research projects and initiatives on the horizon.

Why do you think opportunities like this matter for patients, caregivers, and members of the public?

It was very refreshing to be invited to an in-person event as so many of our contributions are made virtually.�� It felt like a genuine investment in recognising public contribution.

Having grown up in Northern Ireland, lived in Scotland for 30 years and having family and loved ones throughout the UK, it felt important that it was a UK-wide opportunity to bring the research community together.�� It feels important to have positive opportunities like this, to strengthen mutual understanding of the needs and benefits of public involvement and to strengthen relationships across the research community.

Want to get involved? Join 51������ Voices!

Our 51������ Voices network is open to anyone interested in shaping the future of health data research. Whether you’re living with a long-term health condition, caring for someone, or simply passionate about making a difference — we’d love for you to join us.

Find out more about 51������ Voices and sign up today!