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Research News Updates and Blogs

Patient and Public Involvement

By March 20, 2019 No Comments

“Do not wait for someone to come and speak for you.  It is you who can change the world.”   -Malala Yousafzai

While I’m not suggesting that you change the world – although you might – you can make a real difference by becoming involved in research.  It is so important that the voices of children and young people are heard.

Your thoughts and opinions are crucial to ensuring that research is relevant and well designed and that the people who are affected by the research hear about it.

This is called public involvement and can take many forms from helping researchers develop their ideas, to designing research materials, to being involved in disseminating research findings in an accessible manner.  To do this you don’t need to be interested in science or have a desire to work in research.  What researchers want to hear is your voice and your experience.

As Malala emphasises, don’t let someone assume that they know what is important for you. If you are living with a particular condition you are the one who has that lived experience that researchers do not, and that knowledge is essential in ensuring that research is looking at what matters.  It is also important that researchers hear from brothers and sisters or other family members. They also have helpful views to add.

But children and young people are too young to understand research…

This is something that I have often heard, but is simply not true!  If someone explains something to you (gravity, how to play Monopoly, the offside rule) using jargon and making it overly complicated will make it hard for you to understand what they are talking about.  However, by explaining something simply and logically, using plain English and examples, people understand even complex topics, and the same principle applies to research.  I am passionate about getting children and young people involved in research and age should simply not be a barrier. This is what some members of the Young Persons Advisory Group Kent, Surrey, Sussex (YPAG) have said about being a member:

“Our groups came up with ideas such as using virtual reality, head and eye sensors and adapted controllers for disabled people…It was amazing to see really young children coming up with great ideas as well and their opinions were valued and respected.” “The subjects were very good choices and made interesting through the use of games and group discussions.” And the researchers were impressed by the group“I was actually surprised by how much feedback I got from both groups.  Particularly from the children who don’t have constraints on their thinking…They really gave a different perspective to things and can be much more creative than adults in their approach.”

How can I become involved?

There are several ways that you can become involved.  You can join a YPAG of which there are a number of around the country CLICK HERE. These tend to focus on lots of different conditions.   You may decide that you want to work on a specific study, and the newly formed CDLF research hub can help you if you wish to become involved in liver research CLICK HERE 

And finally…

Working with researchers can open up a whole new world.  Your voice matters and people want to hear from you!  Who knows where the journey will take you, but every journey starts with one small step.

Further information

Kate Sonpal
Senior Public Involvement Manager, INVOLVE

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