“Are We Making a Difference?” A Blog by our Young Person's Advisory Group

Why we designed a survey for researchers about Public Involvement

 

Hi! We’re the YPAG — a group of young people who are passionate about making sure that research doesn’t just include us, but truly values our input.

 

We’ve spent time working with researchers through PPIE (Patient and Public Involvement and Engagement), and while we enjoy being involved, one question kept coming up for us:

 

•  "What impact are we actually having?"
• This blog is about why we created a survey for researchers and what the process taught us — not just about research, but also about ourselves.

 

Why we wanted to know our impact

 

We believe that feedback is key. It helps us learn, grow, and understand what’s working — and what’s not.

 

Here are a few reasons we felt so strongly about creating this survey:

 

• We want to know if we’ve made a difference. It’s hard to stay motivated if we don’t hear how involvement helps.
• We want to improve. If we don’t know what worked (or didn’t), we can’t build on it for next time.
• We want researchers to reflect, too. PPIE should be more than a tick-box exercise. It’s about real partnership.
• We want to feel proud. Knowing we’ve contributed something meaningful encourages us to stay involved.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

What was the survey for?

 

Our survey was designed to gather honest feedback from researchers about:

 

• How they involved us and other contributors in their projects
• Whether involvement had an impact
• What could be improved in the future
• Where PPIE is happening – and where it isn’t

 

This wasn’t about blame or judgement — it was about learning, understanding, and finding the gaps so we can do better together.

 

How we designed our survey, collaboratively

 

We didn’t just sit down and write some questions — this was a proper team effort.

 

• First, we met Sue Wood the operations lead for ARC-GM who spent time with us helping us to understand what the different kinds of impact can be.
• We brainstormed everything we wanted to know from researchers. This gave us a starting point.
• We talked through the questions together as a group, making sure they were clear, respectful, and meaningful.
• We reached out to people with different backgrounds and experiences to make sure our wording was inclusive.
• Most importantly — we asked lots of questions ourselves. We’ve learned that no question is a silly question, and that curiosity is a strength.
• Creating a digital survey (skills ect)

 

How was analysing the results?

 

Unfortunately, not as many researchers responded to the survey as we would of liked. This left us wondering:

 

• Was it worth the effort?
• Do people still not understand why PPIE matters?
• Did we even make an impact on those projects?

 

It was disappointing, but also helped us reflect deeper:

 

Maybe some researchers didn’t respond because they didn’t include public contributors at all… and maybe that’s a whole other issue we need to explore.

 

It raised more questions for us:

 

• How can we embed collecting impact for PPIE as we go, to better collate reflections.
• Should we have follow-up conversations?
• Can we better understand why some researchers aren’t using PPIE and help them get started?

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

How it helped us grow

 

Even though we didn’t get all the responses we hoped for, we gained so much from the process:

 

• We learned how to design a meaningful survey
• We developed new skills in communication and collaboration
• We built confidence in asking important questions
• And yes — we’ve added this to our CVs and future job applications!

 

Most importantly, we discovered that we really care about this work — and many of us are now inspired to keep going and do more.

 

Final thought

 

If you're a researcher reading this:

We really want to work with you — but we want to work with you meaningfully. That means knowing what’s working, being open about what’s not, and growing together.

 

We created this survey not to criticise, but to connect. We hope more people will join us in making research better — for everyone.

 

Thanks for reading  - We are currently finalising the results of this survey, they will be released shortly.

 

Published 11/08/2025