Providing the tools to aid the decision to participate in health research.

Making the decision to take part in a trial can often be difficult and children and families are often faced with a plethora of information that may not make a great deal of sense. More often than not, the information they receive about a study is too long and complex, adding unnecessary barriers to participation. Find out what a team of researchers in York and Liverpool and patients and families are doing to overcome this challenge…

Our London YPAG meeting in May by Oceiah

On Saturday the 6th May we had another exciting and packed meeting. Two researchers from the Institute of Child Health showed us a video about illnesses which involved two teens talking about their hospital visits. The researchers asked YPAG’s ideas how to improve information for young people when they transition from child to adult health. […]

Report on evaluating the extent and impact of young people’s involvement in research

Following the GenerationR event in 2013, a report was written that highlighted 11 recommendations that reinforced several important recommendations for the involvement of children and young people in improving the design, development and delivery of paediatric research in the UK and beyond. One of the recommendations was to develop a systematic way to measure the impact of young people’s involvement activities.

My Genome Sequence

Watch an animation explaining a genome, which was created with the help of young people for the 100,000 Genome Project. The 100,000 Genome Project is a national project that aims to collect 100,000 genomes from people with rare diseases and cancer to better understand the illnesses and to develop personalized medicine in the future.

A London YPAG meeting: A brand new animation about the genome & more

Hi guys, Hope you are all well. We had another fabulous time at the YPAG meeting in March 2017, with some researchers from Great Ormond Street Hospital (GOSH) attending and discussing some of their new research ideas like LUCY. The LUCY study or project, is a mental health service for young people. The researchers asked us for […]

Living with an invisible illness – part 5

Read Part 5 of Sophie’s RAiISE Project and Progress

Alexis writes about YPAG & what we do at meetings

Hi guys, My name is Alexis and I`m 9 years old.  Hope you’re well!  I`m part of a group called Young  Person’s Advisory Group at Great Ormond Street Hospital for Children. Yes, I know that the name is quite a mouthful, but that`s why we have a shortened version: YPAG. In YPAG we get to do a […]

Nottingham YPAG Meeting – Saturday 13th August 2016

Nottingham YPAG Meeting written by Beth, aged 12

How we can help Chief Investigators with their Paediatric studies?

There are many ways we’ve been helping Chief Investigators with their Studies in the West Midlands. From Development of Patient Information Sheets for the RAPID Study, you can watch our FILM HERE to show how we helped the Chief Investigator of this study. WE have also been helping with not only Patient Information Sheets and […]

Young people working with a Clinical Research Facility (NIHR Wellcome Trust Clinical Research Facility at Birmingham Children’s Hospital)

The West Midlands NIHR CNR West Midlands Young Person’s Steering Group have also been busy working with the NIHR Wellcome Trust Clinical Research Facility at Birmingham Children’s Hospital. This has been a successful collaboration alongside the Research and Development Department at Birmingham Children’s Hospital You can read about this collaboration below: An example of a […]

Young People acting as Patient Research Ambassadors at Birmingham Children’s Hospital

The West midlands Young Person’s Steering Group have been working hard with the Research and Development Department at Birmingham Children’s Hospital to become “Patient Research Ambassadors.” FILM:You can find out more about the Patient Research Ambassador Initiative and how Young people can be involved at your organisation by clicking here… Recently, one of the members […]

How Young People can help our Commercial Partners in Research?

Recently the NIHR CRN West Midlands Young Person’s Steering Group received some feedback from a Commercial Partner. This feedback really illustrates how children and Young people can work with Commercial Partners to ensure that studies are suitable for the Paediatric population. The NIHR CRN: West Midland’s Young Persons‟ Steering Group (YPSG) recently received the following […]

Representing Generation R at the International Children’s Advisory Network Event (iCAN) in Barcelona – July 2016

International Children’s Advisory Network (iCAN), Barcelona, June 2016 In June 2016, Claire Callens (NIHR CRN West Midlands Patient and Public Involvement Officer) attended the International Children’s Advisory Network (iCAN), 5 day Research and Advocacy Summit in Barcelona. Claire Callens who co-leads and facilitates the NIHR Clinical Research Network West Midlands, Young Persons’ Steering Group was […]

Lupus and You – Patient and family workshops

Lupus and You – patient and family workshops. Find out more about the first workshop held on the 19th March 2016

Living with an invisible illness – Part 4

Read Part 4 of Sophie’s RAiISE Project and Progress

Nuffield Council on Bioethics Industry meeting

Recently, a meeting took place at the Nuffield Council on Bioethics in London entitled, ‘Exploring collaboration between life-sciences industry and young people to improve research’. From our Generation R side, in attendance were: Erin Walker, facilitator of the London YPAG and Orlane Doumbe, a London YPAG member; Jenny Preston, facilitator of the Liverpool YPAG and […]

Helping To Raise Awareness about Research into Children and Young People’s Mental Health

Shout Out For Youth Mental Health Mia, a member of the Network’s Young Persons’ Steering Group writes: On Tuesday 7 June, five of us from the Group were lucky enough to attend the ‘Shout Out For Youth Mental Health’ conference day in Birmingham. There were many inspirational speakers that we heard from, who had come […]

“So long, farewell, auf wiedersehen, good night. I hate to go and leave this pretty sight.”

Yesterday marked my final day as the lead facilitator for the London YPAG.  I’ve enjoyed  tremendously working with all the members over the past two and a half years and we have had some great times. But fear not!  The London YPAG still goes on, and people interested in attending a London YPAG meeting, or joining […]

Another day in the life of a YPAG group

Three of Bristols YPAG group say what they think

Living with an invisible illness – Part 3

Read Part 3 of Sophie’s Invisible Illness Project and progress

‘AWARE for All’ community health event

Recently our London YPAG group was invited to participate in the ‘AWARE for ALL’ event at the Camden Centre (basically a local town hall), which is in the same borough of London where our London YPAG is based. This was organized by an American organization, the Center for Information and Study on Clinical Research Participation […]

The rectal route of administering medicines: Are we comfortable talking about this?

At our last London YPAG meeting on the 6th of February, we had two researchers called Sara Hanning and Catherin Tuleu from the University College London School of Pharmacy come and talk with us about the rectal route of administering medicines. They are working on a project that is looking at administering antibiotics through the […]

Recent London YPAG meetings: Catch up time part 2

For our last meeting in February, Martin Lodemore came to the group from INVOLVE, seeking input on their payment and remuneration policy for involving children and young people in research. One thing the group stressed was the importance of having travel provided up-front for any meetings or involvement activities they take part in. Cost for […]

New Young Person’s Advisory Group launched in Reading

New young person’s advisory group and parent group set up in Reading. Sarah Harrison talks about this exciting new development working with patients and families affected by anxiety and depression

Living with an invisible illness – Part 2

Read Part 2 of Sophie’s Invisible Illness Project and progress since January.

Recent London YPAG meetings: Catch up post 1

Our last two meetings have seen a varied group of people come for advice. At our meeting back in November, we had people come from the 100 000 Genomes Project asking for our views on the Project’s participant materials, and a researcher come ask us about a generic consent project. Specifically, this is around routine […]

Winter update from London YPAG

Well it’s been some time since the London YPAG posted on this website and please don’t think we’ve been remiss in our commitment to sharing the activities of the group – we’ve had an administrative problem! The problem is all fixed now, and we’re delighted to announce that we are back up and running with […]

100,000 Genomes Project

Keith Wilson, Patient Research Ambassador visits the Liverpool YPAG to talk about the 100,000 Genomes Project

Exciting things happen when involving young people to promote better research for better healthcare

GenerationR young people and Patient Research Ambassador talking about exciting things happen when you involve young people to promote better research for better healthcare.

Children and Young People’s Mental Health Week 8-14 February

In support of Children’s Mental Health Week NIHR CRN have launched a webpage dedicated to children and young people talking about mental health research: https://www.crn.nihr.ac.uk/mentalhealth/youngpeople
Read more …

Young people’s views on a Massive Online Course (MOOC) entitled: Improving healthcare through research

Massive Online Course (MOOC): Improving Healthcare Through Clinical Research https://view.vzaar.com/5394540/video What is a MOOC? Improving Healthcare Through Clinical Research is a MOOC or ‘Massive Open Online Course’ available to anyone around the world and free to follow. The course was put together by the National Institute of Health Research Clinical Research Network (NIHR CRN) working […]

Research and Me!

Juvenile Dermatomyositis (JDM) patient, talking about a patient’s perspective on research, the benefits of involving young people in research and how we can get more patients involved in the future.

Young Person Led Project – Living with an invisible illness

Blog by Sophie Ainsworth As so many of us know, when you are ill, it is vital that you receive support from those who you usually trust. Your doctors, family and friends are all extremely important in helping you to cope with your illness and to help you feel as healthy as you can. Young […]

Attending a YPAG meeting by Ryan, Nottm YPAG member & Dr Luca Marciani

A young person’s and researcher’s perspective on attending a YPAG meeting in Nottingham.

My second Nottingham YPAG meeting – Arts + Crafts session

A blog focusing on the last two Nottingham YPAG meetings written by Anmol, aged 17 who recently joined the group.

Our first London YPAG blog post

Hi there! This is our first London YPAG blog post, on our meeting in June… This is what our group said… ‘Today we met a researcher who presented us with a research related app. We worked through it and helped her to determine what worked best and what needed to be scrapped. Our next guest is […]

Nottingham YPAG meeting ‘Innovation Challenge’

Nottingham YPAG meeting ‘Innovation Challenge’ by Olivia

An Investigation into Schools and Research Part 1: Is there room for critical thinking about research claims in the school curriculum?

Esme member of the London YPAG Investigates into Schools and Research: Is there room for critical thinking about research claims in the school curriculum?

A day in the life of a YPAG group by Rachael and Lottie

A summary of what two of Bristol YPAG’s members REALLY think of your research proposals

International Children’s Advisory Network (iCAN)

YPAG members Katherine and Sarah report from the iCAN summit.

Summer Scientist Week at The University of Nottingham

Two Nottingham YPAG members explain about their recent trip to the The University of Nottingham, Summer Scientist Week.

Generation R Editorial Board meeting in Oxford

Report from a recent meeting attended by Nottingham YPAG member Scarlet Jordan

New Online Young Person’s Advisory Group (YPAG) Start-Up Tool

Interested in setting up your own YPAG but dont know where to start?

Ethics in clinical research

YPAG involvement in Nuffield Council’s project on ethical issues surrounding clinical research

How should YPAGs members get a say in research funding?

Nuffield Council on Bioethics report

A trip to Oslo!

Report of our trip to Oslo to help improve the usability of a questionnaire

Ethical Medicines Industry Group Meeting

Report from a recent meeting attended by Liverpool YPAG members Georgia Semple and Robyn Challinor

Consultation on an RCT on Vitamin D and Insulin

This is a summary of a consultation by NIHR Clinical Research Network: Children.

What are young people’s views about Clinical Trials?

This is a summary of a study carried out for young people aged 13 and 14 years old involving the West Midlands YPAG.

Young people’s views on developing a paediatric hand and upper limb outcome measure

This is a summary of a survey of young people to find out about ways of measuring hand and arm movements.

What flavour would children choose for their medicines?

This is a summary of a study that investigated children’s preferences for the taste of medicines.