Patient involvement

We need you!

We put children and their families at the centre of what we do – from the very beginning to the very end.

Children & their families

Children and their families help us to write our research questions, chose the important outcomes, decide what our studies are called, design the logos, develop the websites, make the cartoons that explain our studies, work alongside our team to ensure that the study is successful, interpret the study findings and put them into practice! Patients and their families are part of our team and, like everyone else, they share the highs (and occasional lows!) and share the success in the final study results.

We have an amazing team of families – and welcome more. We will help you to develop new skills, support you to receive training if you have particular needs, connect you with our other families in similar roles and promise to be a supportive team to work alongside. We ask you to bring your key skills – your experiences and enthusiasm, alongside a desire to improve the care for other children and their families.

What it means to be involved

Phoebe has been involved with our research for the last five years. Phoebe is a mum to two children with a background in marketing. With the arrival of her children, she had the opportunity to take part in a research study and has also acquired first-hand experience of childhood injuries! Phoebe became involved with research after learning of some of the controversies in simple fracture care for children.

Phoebe started as a parent co-investigator on the FORCE study and is now involved in several of our trauma studies again as a parent co-investigator.

I didn’t ever expect to be involved in medical research – I really didn't know much about it or how research worked. But it has been great – really great – to see a study through from start to finish, to work with the multi-disciplinary team who deliver it and to be able to play a small part in improving the lives of children and their families.

The team meetings initially seemed a little daunting, although I quickly settled in and the teams have been so friendly that it is easy to ask questions. I’ve learned that having someone that knows nothing really about the medical side of things can be really helpful. It’s often the seemingly little things, like making sure that the language is right – or pointing out something that doesn’t work in an animation that can make the difference to research – so it’s fun and interesting to think it through. I often discuss the development of animations with friends at the school gate – to make sure that we get lots of opinions. Some of my friends are also now co-investigators on studies. Being involved in studies does fit around family life too.

It has been great to see the results implemented in the NHS (and around the world) and I am proud to play a small part in this. I have also had the opportunity to be a published author in several medical journals – again, something I never imagined I would be involved in but I am delighted! I would definitely encourage others to get involved - medical research is so important.

Hear from Phoebe and others, speaking to NIHR about what it means to be involved in research

Making research engaging

We love to involve families in making research accessible. We use cartoons and patient stories to help others to understand what is being done, and to overcome anxiety that may arise when faced with a child with an injury or illness.

Dr Xand and Dr Chris were hugely helpful in explaining some of our studies to children.

Making research engaging

Xand, I'd like to ask you a favour.

Nevermind that Chris. You know what?

I was just thinking that the best thing about being a doctor is that you always know exactly what to do in any given medical situation. It's brilliant.

Really Xand? Well what about certain types of elbow fracture? Like uh, like

An epicondyle Fracture?

Like an epicondyle fracture, exactly.

Or certain kinds of wrist fractures where the bones are really, really out of place.

Ouch. Would you always do surgery or do you always avoid surgery and put on a cast? Would you know what to do?

Well, some doctors do surgery because they think it'll help a child get back to normal life quickly.

But other doctors do it differently.

Exactly. Xand, we are not quite sure what to do.

You know what the problem here is, Chris, we don't know what to do. We don't know which treatment is best.

Well, that's exactly what I'm trying to tell you, Xand. That's what I wanted to...

What we need to do is a clinical trial.

Okay?

Now here's how it works. You take patients with the same problem, like the same fracture, and you split them into two groups.

And then when you've got the two groups with one group, you do the surgery, the other group, you treat them with casts and then you see which groups do better.

It's brilliant. It's called the clinical trial.

Yes, Xand. I know that, that is exactly what surgeons are trying to do.

I tell you what, Chris, also, people get a bit nervous about going into clinical trials.

That's true.

So we should make a video encouraging kids to sign up for clinical trials if their doctors ask them to.

Yes, Xand, that's exactly the favour I've come to ask you to do.

Right. So here's how you do it, Chris.

Hey everybody, if you're invited to take part in a clinical trial, you should definitely sign up to do it because you'll get excellent treatment and you'll be helping doctors and patients in the future who come after you.

Well, there you go. That is a, uh, that's a brilliant example of exactly what to do, what I wanted to do.

Thanks very much indeed Xand.

Right I'm glad we got that done, Chris, because I have a little clinical trial of my own to conduct.

I need to clean my toenails, and I'm wondering whether to use your fork or your toothbrush.

So I'm using a fork on the right foot and the toothbrush on the left.

Bye everybody.

What?