Eye-YPAG meeting 06 July 2024 – by Hamza Noor

This was my first eye-YPAG meeting. I came as a supporting facilitator, because Vijay, the regular facilitator, has had a baby – CONGRATULATIONS VIJAY, from the whole YPAG group!   It was a great meeting!  – 15 children and young people aged 5 to 16 years attended, with the youngest two dipping in and out […]

GOSH YPAG Hybrid meeting- 25 May 2024 and our visit to Zayed Centre for Research into Rare Disease in Children (ZCR)

At our May GOSH YPAG meeting we welcomed 12 members who joined online and 9 members who attended in person. As always, our meeting day had a full agenda and our Young Facilitators supported activities and helped us make the day run smoothly.   GOSH YPAG members who attended in person were able to: meet […]

YPAG KSS May 2024 Meeting

At the YPAG KSS meeting in May held at the Royal Alex Children’s Hospital in Brighton, we were delighted to welcome some new members. The group had a presentation from Gill Middleditch a MSc Advanced Clinical Practitioner in Community Paediatrics, based at Kent Community NHS Foundation Trust. Gill is working on a project looking at […]

Flying, Food banks and Films- By Iman

The Herts YPAG had an online meeting on May 10th, kicking off by sharing the emojis if how we were feeling – this varied from 😊(pure joy) to 😔 (quite a few of us are doing exams) . Fortunately, the majority of the emojis were positive and no one was too tired to contribute to […]

New Owls Induction launched

At out last F2F meeting in January, Mr Karl Ward from Research and Innovation Education department, came and spoke to us about the basics of research as part of our new induction the Owls group. We enjoyed taking part in a chocolate randomised controlled trial and hearing about what research actually is and why we […]

Launch of CHORAL by Amelie, member of Leeds Young Research Owls

In our most recent meeting on 7th March 2024, the spotlight fell upon the innovative CHORAL (Child Health Outcomes Research at Leeds) program. This initiative, spearheaded by the University of Leeds in collaboration with Leeds Teaching Hospitals NHS Trust and Leeds Hospitals Charity, stands as a significant effort aimed at confronting the challenges posed by […]

YPAG KSS 6th Anniversary Celebration

The group recently celebrated their 6th anniversary with an art-based workshop led by Sofie Layton.     Sofie has worked as an artist for over 30 years. Sophie’s work includes an art installation at Evelina Children’s Hospital, a residency at Great Ormond Street Hospital and she has worked with the Eye-YPAG based at Moorfields Eye […]

Filming, Food & Further Research, by Toby

The first in-person YPAG meeting of the year took place on Saturday 9th March. This was the first YPAG meeting that I have attended, as I have just joined the group. The meeting started with a ‘two truths and one lie’ icebreaker which helped me get to know everyone🧊. After this, we had lunch – […]

GOSH YPAG Annual Visit to University College London (UCL) Division of Psychiatry – 14 February 2024

Hello from the organisers! Each year we invite GOSH YPAG members to contribute to a lecture for the ‘Current Research in Children and Young People’s Mental Health module’ of the UCL MSc in Mental Health Sciences. The students are asked to prepare an information sheet and consent form for a research project. In small groups, […]

Research, frozen food and planning a film! – By Cherish

The first Herts YPAG meeting of the year took place online on Wednesday 24th January. The meeting started off with an icebreaker in order to get things going – a game of “I spy”, spotting things in each others’ online background. Whoever guessed the object first got to be the next ‘spy’. It was interesting, […]

Leeds Owls successful in supporting NIHR DF application

February 2024: I met with the Leeds Young Research Owls when I was developing my research proposal for a NIHR Doctoral Fellowship. They welcomed me to the group and were very interested to hear my research ideas. This generated some useful discussions and gave me lots of valuable and thought-provoking insights which significantly improved my […]

New year, new projects – by Elise and Ethan.

On Saturday 27th January we had a YPAG session, our first of 2024 We started off our YPAG session with an ice breaker. Vijay asked us, “if we could teach one topic, what would we teach?” Everyone gave their answers as well as their name and age. Topics ranged from cooking to indoor climbing and […]

School food and Santa: a great end to 2023 for Herts YPAG ⛄

This post is about the last two YPAG meetings of 2023. The first was an online meeting we had in November and the second was an in-person meeting and Christmas party in December 🥳 November online meeting We started our online meeting off by playing an icebreaker where we all had to find one food […]

What it’s like being a member of YPAG KSS – by Catherine

I have been fortunate to attend the Kent, Surrey and Sussex NIHR YPAG in Brighton for almost two years. The group is a fantastically friendly forum which meets each month either online or in person at the Royal Alexandra Children’s Hospital in Brighton. It is enormously uplifting to take part in sessions, and to come […]

Research, research, research – lots of new ideas – By Orla

This session was super busy as we had 5 researchers (more than usual) and although it was slightly rushed, I think I learnt lots of new information about research and eye conditions. The first study we heard about was Michael Crossland’s study, which was very interesting.  He is trying to figure out if the amount […]

Updated YPAG KSS poster

Check out the updated poster from the Kent, Surrey and Sussex  Young People’s Advisory Group. We are looking forward to our next meeting on 18th November. We have two researchers presenting and look forward to hearing about their projects.    

A new school year at YPAG! Food sustainability & linking mental and physical health, written by Cherish

Our YPAG group had another in-person meeting on Saturday 23rd of September, where we all met at the university again! We started off the meeting with the classic icebreaker game – two truths and one lie – butthis time with a theme, which was based on what we all did over the summer holidays. It […]

Revamping Research with Young People’s Advisory Group Kent, Surrey & Sussex

This stop frame animation was made during a workshop to celebrate the 5th anniversary of the Young People’s Advisory Group Kent, Surrey & Sussex, and highlights some top tips for researchers.  

The research cycle and new projects by Muminah

Today was my first meetup with the Young People’s Advisory Group for eye research, it was the best time. I got to relate to kids my age, the group made me feel welcome, this allowed me to feel confident when I was speaking. The topics we discussed will have an impact on the future and […]

Future Minds: a podcast on involving children and young people in research co-produced by the Herts YPAG

We’ve made a podcast! 🎙 Episode one: Making involvement happen In the first of three podcasts we talk to some adults who help children and young people to be involved in research (facilitators) about why it matters, how to do it well and what we can do better. Thanks to Deidre Leyden from the London […]

eyeYPAG go to San Diego for iCAN – July 2023 – by Orla and Niamh

Here’s what Orla had to say: The iCAN summit this year was super fun and I think they have lived up to the fact that they try to improve the summit every year and I’m excited to see how it gets better in the years to come. At the summit, one thing I really enjoyed […]

Improving Physical and Mental Health and Care for Young People – by Eleanor

Our July meeting was on Zoom again. We started off the meeting by doing an icebreaker game where we were put in different breakout rooms and had to find 3 things that we had in common and 3 differences. This was quite a fun way of learning more about each other. We ended up finding […]

GOSH YPAG and a Summer of Science by Oceiah and Parveen

GOSH YPAG have been collaborating with the ChromaDose team since March 2021 and several Blogs have already been written with our updates. The ChromaDose team are conducting research into developing a blood testing device to personalise the amount of medicine (anthracyclines) children with cancer receive. This is due to the differences in exposure (the way […]

How do you write a good ethics form? by Oscar and Matthew

We met at the university on Saturday 9th June.  When we arrived, the building was still locked as no one had arrived with the keys yet, but luckily we managed to get in in the end 😝 We started the day with a great icebreaker game where we each had to tell two truths and […]

Apps for School and Patches – by Eleri

The meeting on the 20th of May was very enjoyable and productive. We started off with catching up with each other and then we had a brief of what the meeting itinerary is. We officially began by answering questions such as what have u been up to since we last met; many answers to that […]

Spring Fun! – by Jacob

On Friday 21st of April, we had our 8th YPAG meeting, and I was very happy to see everyone online, but the only downside is that there is no pizza when we meet on Zoom.

UCL’s ChromaDose project and GOSH YPAG Co-Production…the 5th session!

31 members of GOSH YPAG  were delighted to attend the fifth session of the ChromaDose project, ‘Advancing a bedside blood-testing tool to support personalisation of cancer treatment in children’ at our January 2023 meeting. We are always interested to hear from Prof Stefan Guldin and Lisa Pfaffenrath on how the project is progressing and what […]

New members, Patches and Quality of life – by Ethan

In today’s session we had some new members join us, they were welcomed, and we had some of the original members of the group tell them what we do at YPAG. We started off with Vijay asking us questions and familiarising ourselves with what research is and how it can be beneficial to people. We […]

Encouraging healthy, sustainable diets and our 1 year anniversary by Keira

We had our fourth in-person meeting on Saturday, 11th March – and our one-year birthday party! We started off with pizza, wedges and salad for lunch and followed with a memory icebreaker game where we had to remember moves from the previous people, and it was quite hard 😂. Then Rebecca, a researcher from the […]

Inspiring young people in Science, Medicine, Art, Research, Technology – science in the community

Setting up a Science Club to inspire children and young people about science, medicine, art, research, and technologies that shape their lives. 

GOSH YPAG’s annual collaboration with University College London (UCL) Division of Psychiatry

GOSH YPAG member Oceiah talks about the group’s involvement with students and lecturers.

Genomics and food systems – and a great start to Herts YPAG 2023 by Benita

This was the 6th meeting of YPAG which took place on 26th Jan 2023, which was also our third meeting on Zoom.

Becoming a Medical Research Council (MRC) Young Person’s Panel member By Katie, GOSH YPAG

Katie wrties about getting actively involved in developing an MRC study of adolescent health

Becoming a Medical Research Council (MRC) Young Person’s Panel member By Walter, GOSH YPAG

What are the Medical research Council (MRC) doing? They are setting up the Adolescent Health Study , a new longitudinal population study, which aims to enable a better understanding of the health and wellbeing of young people. In order to prepare for this study, the MRC has invited applications for funding to develop research methods […]

GOSH YPAG member Zara attends National Institute of Health and Care Research (NIHR) Children and Young People (CYP) MedTech Cooperative Young Person Reviewer Workshop

How did the opportunity come about? NIHR CYP MedTech have funding to give to researchers to explore some ideas they have for technologies that will support the mental health of young people who have long-term conditions, and their families. These researchers must write a funding application explaining how they want to use this money, because […]

Festive fun by Stela

We had our last Herts YPAG meeting of 2022, and the third in person, on Saturday 3rd December, and as it was December we had a Christmas theme 🎄🎅. We started off an update from Julia, a researcher from the University of Hertfordshire, about the project she’s involved in on problematic use of internet by […]

GOSH YPAG last meeting of 2022 by Parveen

I had the pleasure of attending GOSH YPAG’s last meeting of 2022!   Our first three sessions were with researchers re-visiting the group!   First of all, the lovely Dr Gabriela Petrof, a Consultant Paediatric Dermatologist at GOSH, came to update us on her work surrounding mesenchymal intravenous stromal cell infusions in children with a […]

GOSH YPAG’s next instalment of the exciting ChromaDose Project!

By Oceiah- GOSH YPAG member GOSH YPAG (Sept 2022) were yet again involved in this ground-breaking project to personalise childhood cancer treatment. Us lucky members, were not disappointed to hear how the ChromaDose team have progressed their innovative research following our ideas in our July meeting. This time we were in two different sub groups […]

Your Rheum Mini Careers: Zahra’s Project

Why did you want to take part in a mini career project? I wanted to take part in a mini career project because I knew what I wanted to be doing, but I just didn’t have the knowledge on how to get there or what the first steps to take were. What career/professional did you […]

Your Rheum Mini Careers: Ecem’s project

  Why did you want to take part in a mini career project? To gain an insight into my dream job and to find out first-hand what it entails. What career/professional did you want to speak to? A paramedic. What key things did you want to ask a paramedic & why? What do you do […]

Herts YPAG meeting September 2022 by Olivia

Our YPAG meeting on the 23rd September was by far one of the most interesting online meetings we have had so far.  We started with a Zoom poll game of ‘Would you rather….?’ which was a great way to start the next few hours of researching.    We were joined by 2 researchers from Queen Mary’s […]

Red light, Patches and eyeball crafts – 24th September – by Niamh Linehan

On Saturday 24th September 2022, the eye YPAG met in person for the first time since the end of 2019.  I love meeting in person so  much more than on Zoom – although we do have to get up a lot earlier to travel to London!  It’s worth it though!  It was great to catch […]

GOSH YPAG member Hannah reports on her Work Experience

My name is Hannah and I’ve been a Great Ormond Street Hospital (GOSH) YPAG member for a year and a half now. My involvement so far has all been virtual until this summer when myself and another GOSH YPAG member had the opportunity to go on three days of work experience in a research laboratory […]

The eye-YPAG visit France! iCAN conference – Various authors

We had the amazing opportunity to send our young people on a trip to the iCAN conference (International Children’s Advisory Network meeting) hosted in Lyon France. The network brings together and supports young person advisory groups around the world to provide a voice for children and families in medicine, research, and innovation. Below we have […]

Eye-YPAG meeting blog 02/07/2022 – by JN

Some of us and some of the children and young people from the GOSH YPAG have done training that was organised with Jacq to learn about how to interview other children and young people. They told us about their experience, and Jacq will run more training workshops in the summer or autumn. Jacq presented two […]

Pizza 🍕and plasticine 🎨 – Herts YPAG meeting July 2022 by Samuel

We had our third Herts YPAG meeting, and the second in person, on the 9th July with 12 YPAG members getting together on a hot, sunny Saturday. We started off with pizza for lunch and then a game of human bingo, to get to know each other a bit better. At a previous meeting we […]

The First Online Herts YPAG Meeting – by Stela

This meeting took place on the 20th of May and all 19 members were there, some for the first time. First, we did a scavenger hunt to warm up. We had to find specific items from around our houses, which I found really fun. 🧦📕🍎🖼 Next, Julia told us about a project she’s planning. She […]

eyeYPAG and GOSH YPAG train together to be Young Interview Assistants

Hi my name is Walter and I was one of 6 YPAG members who took part in three evening training workshops on Qualitative Interview training in April and May 2022. Below is a Q&A where I tell you about our experiences. You can also listen to myself, Sarun, Niamh and Orla telling other YPAG members […]


Hey this is Ecem, one of the Your Rheum members. Laura and Janet (Your Rheum organisers), at a virtual Your Rheum meeting earlier in the year, talked about an opportunity to write a piece of work for a scientific journal called BioMed Central, or BMC for short. The paper was going to be about the […]

Herts YPAG 2.0 is go! By Benita

We had our first meeting on 19th March at the University of Hertfordshire. We had 14 new group members who attended – aged between 9 to 17. I joined the YPAG group because I am interested in research and I wanted to know more, I thought that it was a great opportunity to work with […]

Spring 2022 eye YPAG meeting by RN

On Saturday April 23 we met one more time on Zoom – we so hope that our next meeting will be face-to-face again! It was great to see each other on screen at least. We talked about what everyone had been doing over the Spring holidays. Then Dr Thomas gave an update on project Oriel, […]

Raising Awareness of Antibiotic Resistance with children and young people – part 2

Blog by Jenny Preston In 2019 I reported on an engagement project that was co-designed by children and young people to explore one of the greatest global public health threats of our time, antibiotic resistance.  The project forms part of the dissemination activities of a NIHR HTA-funded study called BATCH (Biomarker-guided duration of antibiotic treatment […]

Herts YPAG is looking for new members

The Hertfordshire young people’s advisory group (Herts YPAG) are looking for new members who are 10-18 and live in Hertfordshire You don’t need any previous experience, just be interested in getting involved in research about children and young people’s health and care and the communities we live in, and be able to come to 7-8 meetings […]

Eleri has drawn a special Christmas message from eyeYPAG!

  Thank you Eleri, and for all your wonderful contributions to eyeYPAG over the past year – Merry Christmas!  

GOSH YPAG and Creative Research methods

We are currently working in partnership with Sensing Spaces of Healthcare (hosted by the University of Bristol in collaboration with GOSH Arts, GOSH, and Fresh Arts, North Bristol NHS Trust) on creative research methods. Read all about our workshops here 

September EyeYPAG meeting – focus on Dissemination

On Saturday 25th September 2021, in our YPAG meeting, we spent some time trying to help Mr Larkin and his team share the results of their KERALINK trial in a way people would understand. The KERALINK trial tested the ‘cross-linking’ treatment for Kerataconus, to try and stop the deterioration of sight in young people with […]


Your Rheum member Sophie has written a great piece of work first published in May 2020 (Archives of Disease in Childhood, an international academic journal), about her experiences of living with a hidden illness. Sophie highlights some really important points that many young people with a health condition share, but she also reminds us that […]

eyeYPAG: the evaluation

Update: we’ve published an academic journal article about our evaluation! You can read it here.  eyeYPAG started in Spring 2019 so, after our first two years, we wanted to evaluate* the eyeYPAG so that we could learn from everyone involved what has been good about the group, what difference we have made and how we […]

Summer 21 eyeYPAG meeting by Jasmine

We started off with a drawing challenge: draw something that represents what you like about eyeYPAG or what eyeYPAG means to you 🎨. Here are a few of our drawings: Some of us are working with Louca-Mai on an evaluation of our group. We’ve done surveys and focus groups to get the views of group […]

GOSH YPAG and YPAGne – working with the ChromaDose team

GOSH YPAG and YPAGne are involved in a ground-breaking project to personalise childhood cancer treatment. I’ve written a Blog post for their website! Oceiah – GOSH YPAG

GOSH YPAG and the ChromaDose Project

GOSH YPAG and Chromadose   We are excited to be involved in a ground-breaking project to personalise childhood cancer treatment. The ChromaDose  technology will be able to calculate each patients’ drug exposure within a drop of their own blood. This will mean, the amount of cancer drugs the patient has can be adjusted to suit […]

eyePATCH adventures: eyeYPAG’s March 2021 meeting by Berkley

We started this eyeYPAG meeting with a scavenger hunt! Then Jacq showed us all the final version of our group shared agreements, with a new border designed by Niamh and Orla. You can see the video and read more about them here: https://generationr.org.uk/eyeypag_shared-agreements/. We agreed that we would play the video at the start of […]

My Experiences as a Medical Student @ University: Challenges & Solutions

Health and my JIA was a big concern with me when thinking about not just my course but all the other things that go with university. I’m not going to sugar coat it, there are many things that I do find challenging about being a medical student whether this is long commutes to placement that […]

Shared agreements: eyeYPAG’s ways of working by Jacq Miller

A Research Advisory Group with a ‘Co-Production’ vibe From the beginning, we wanted our YPAG (Young People’s Advisory Group) at Moorfields Eye Hospital to have a ‘co-production’ feel; we aspired to work together with a sense of everyone being equal, with every member’s views heard and valued. To help us, we were lucky to partner […]

Jan 21 eyeYPAG meeting by Eleri

Hi and welcome to the next blog for eyeYPAG. We had our 11th meeting, and our 6th meeting on Zoom, on 23rd January 2021. We started off with a show and tell game and then sang happy birthday to the group members who’d had birthdays since our last meeting. Then Jacq showed us the latest […]

GOSH YPAG member Suki talks about a recent collaboration with UCL Division of Psychiatry

This week I, along with 8 other GOSH YPAG members was given the opportunity to represent GOSH YPAG in an online lecture on children and young people’s mental health. Working with a team at UCL MSc in mental health sciences in the Division of Psychiatry; helping them devise information sheets and consent forms. We gave […]

Holly’s report: how YPAG meetings can help shape research

Read Holly’s account of how the Hertfordshire YPAG has been shaping research and policy during COVID restrictions.

‘Gene Therapy explained: Changing our bodies’ recipe to treat disease’

    Guess how many pairs of jeans you have in your wardrobe! Now, guess how many genes are in your body. Are you wondering what genes are anyway and how they can help to treat an illness? We worked on a brand-new animation to explain exactly that. Well, except how many jeans each of […]

eyeYPAG November meeting by Eleri

At the start of the meeting, we played a fun game of ‘would you rather’ in the form of a Zoom poll. After that, we sang a heart-warming “happy birthday” to those who have a birthday since our last meeting. Then, Louca-Mai updated us on the radio interview she and some group members did for […]

Back to school – who asked the students?

Read about Freya’s research project about young people’s views on returning to school during the pandemic.

Making a difference to children’s health research

Hear from Daisy about the impact young people are having on the design of children’s health research.

GOSH YPAG interview CEO

The GOSH YPAG interviewed Matthew Shaw, CEO of Great Ormond Street Hospital, on environmental issues, COVID19 & personal matters.

Supporting future eye research – eyeYPAG’s 4th online meeting by Orla

We had our 4th eyeYPAG meeting on Zoom on 19th September.

Zooming into summer

eyeYPAG’s 3rd online meeting by Eleri: Big Data and “lazy eye”

Hertfordshire YPAG group meeting blog: 14th July 2020

Daisy Cooper describes the group’s work with researchers looking at coping with loss, and a project using photography to promote wellbeing.

GOSH YPAG – First virtual meeting July 4 2020

Hello, my name is Sandra and I’ve been a GOSH YPAG member for the last two years

YPAG KSS – Successful first Zoom meeting

First Zoom-YPAG KSS Meeting Successfully held on June 6th .

Zooming to success – update on a virtual eyeYPAG meeting by Orla

This was a very different YPAG meeting to normal – it was held via Zoom as a remote meeting because social distancing means we could not all travel to London. It was quite strange at first as we were all a bit quiet, but we soon warmed to it. We started off by saying hello […]

London YPAG January 2020 meeting

Hi guys, how are you? It’s Alexis. I hope you are doing well in the flurry of corona virus and quarantine.

Celebrating Two Years of the Young People’s Advisory Group (YPAG) Kent, Surrey & Sussex

How time has flown!  It only seems like yesterday that we were celebrating the first anniversary of YPAG KSS and now a year on and with more research projects under our belts, 13 children and young people, 8 parents and carers and 6 YPAG facilitators gathered together on February 1st 2020 to celebrate another successful […]

eye-YPAG Feb 22nd 2020 by Jasmine

For the second time we met at the Children’s Eye Centre at Moorfields. We had the whole second floor to ourselves. There were three sessions. Sofie Layton, our resident artist, gave a presentation with all the logo designs that we had developed at the last meeting. Some were in colour, other in black and white. […]

YEAH project – co-creating health research education with young people

Youngsters EngAgement in Health (YEAH) project officially launched.

Health Tech Workshop Event Report

Hot off the press! Read our report – Young people shaping healthcare technology research

DesEYEning our new logo – update on the 4th eyeYPAG meeting by Niamh and Orla

The 4th eyeYPAG meeting took place at the end of November at the hospital. It was filled with information, art, fun and food. As a warm up activity, we made screen prints of cells and they looked great. We then all sat in a circle and had to tell everyone two facts about ourselves where […]

Members of YPAG KSS speak at INVOLVE Children and Young People’s Showcasing Event

In October members of YPAG KSS were invited to present at the prestigious ‘Involving Children and Young People in Research’ Showcase Event organised by INVOLVE and held at the Centre for Public Engagement at Kingston & St. George’s, London. Dr Louca-Mai Brady kicked off the event with a focus on undertaking inclusive approaches to children […]

GOSH YPAG member Sandra provides voiceover for GOSH Sample Bank animation

  Sandra has given great support to the communications team not only by recording the voice over for the Sample Bank animation but also by taking part in a Q&A to help engage with patients to get involved. Learn more about GOSH Sample Bank Read Sandra’s interview below: What do you personally think of the impact […]

GOSH YPAG member Teo takes over twitter at the NIHR GOSH BRC Family Fun Day for research 2019

A big thank you to GOSH YPAG member Teo who hosted @ GreatOrmondSt Twitter account, to give  visitors the inside scoop of the day’s activites at this year’s NIHR GOSH BRC Family Fun Day for research on 26 October 2019. Teo is a dedicated YPAG member and has been involved in lots of other activities to represent […]

When Your Rheum tackled the hearty dragon

In the planning of our autumn Your Rheum meeting, visiting Wales was at the top of our location list, as Your Rheum hasn’t been there before. So, on Saturday 9th November we made it to Cardiff!! Kat and I arrived at midday, in a dry but cold Cardiff city centre and made our way to the […]

EyeYPAG – Update on our 3rd meeting by Eleri, October 2019

In our 3rd meeting we discussed many important and educational issues including: trust, research on eye allergies, child-friendly information about research and future events. All our activities were extremely informative, fun and exciting. Ethics: We did an exercise about how children would feel about researchers asking them personal information. We said “children may feel intimidated […]

Raising Awareness of Antibiotic Resistance with children and young people

What is Antibiotic Resistance? – a young person led drama and arts project for children and young people

Celebrating 10 Years of West Midlands YPSG

The West Midlands Young Persons’ Steering Group had a 10 year celebration last month. It was a great day where current and past members attended to talk about their experience of the group and how it’s impacted on their education and career. The day was made up of a mixture of video’s and presentations from […]

London YPAG July 2019 update by Alexis

Hello, how are you? In case you are wondering I am fine. School has been great; I shall inform you what has happened in the last YPAG session which was on July 6th 2019 Making a new video to explain Gene Therapy Linda Von Neree, (the old GOSH YPAG Lead, whom now works in patient […]

Eye-ce cubes needed at the 2nd eyeYPAG meeting! By Niamh

The second Moorfields Young Persons Advisory Group meeting (also known as Eye-YPAG) was filled with information, updates and new faces on 29th June 2019 – a very hot, sunny day. To start with, there was a great speech by Jasmine and Rhianne about the Great Ormond Street YPAG, which is for children from 8 to […]

YPAGne Meeting May 2019

Our May YPAGne meeting had a strong emphasis on technology. Dr Heather Lambert came to discuss the increasing problem of young adults forgetting to take their medication, due to changes in their lifestyle. Researchers have developed an Aparito app prototype to help children with Chronic Kidney Disease (CKD) remember to take their medication. They asked […]

YPAG KSS get involved in tech workshop at Great Ormond Street Hospital

On  17 April , five members of YPAG Kent, Surrey & Sussex (Ella, Ed, Alexis, Kit and Ben) travelled to Great Ormond Street Hospital (GOSH) to take part in a Health Tech Workshop organised by GOSH DRIVE (Digital Research, Informatics and Virtual Environments) and the Generation R Alliance. In total 25 C&YP aged 10–21yrs representing YPAGs […]

YPAGne Update

The Start of 2019 has been busy for YPAGne! We have had three meetings so far, reviewing 12 research and quality improvement projects. In March,  the Great North Children’s Research Community Conference was held at the Centre for Life in Newcastle city centre. YPAGne members Ollie, Fatimah and Nikhita took to the stage in the […]

Eye-YPAG – Update on our first meeting by Jasmine, March 2019

On Saturday, March 2, 2019, we had our very first Eye- YPAG group. It was so much fun! We did all sorts of activities, put together by Artist Sofie Layton, who was helping Jacqueline Miller with her C-i-2-i project. We embossed aluminium paper with pictures of eyes. Some of us made pictures looking at eyes, […]

Highly Commended accolade for YPAG KSS at regional awards ceremony

In February 2019, NHS Trusts, researchers and patients across the Kent, Surrey and Sussex region came together to celebrate the excellent health and social care research taking place across the NIHR Clinical Research Network. The awards were presented by Sine Littlewood, head of NIHR CRN business development and marketing, Dr Kate Jones, KSS CRN chief […]

New Head of Patient and Public Involvement for Research in Nottingham

Kate Frost is the new Head of Patient and Public Involvement and Engagement (PPI&E) for the Nottingham Bio-medical Research Centre, Clinical Research Facility and Research and Innovation

London YPAG January 2019 update by Maisie

Hello, I’m Maisie and I joined YPAG last November, but this is my first blog post. I hope you had a lovely Christmas and happy New Year! This is what happened at the January meeting.

First Year Celebration for Kent, Surrey and Sussex

Celebrating a year since the inaugural session of our YPAG in November 2017, the greatest number of young people ever attended the meeting – 20 – including five new young people. Welcome!

London YPAG- November 2018 update by Alexis

Hello everyone I hope you have had a happy Christmas, here is my blog from the last YPAG Meeting. ‘Research on a new blood test to help diagnose sepsis and serious infections in paediatric emergency departments’ At the last YPAG, we had in attendance researchers from Great North Children’s Hospital. They said: Doctors don’t always […]

London YPAG – September 2018 update by Alexis

Hello, I hope you’ve had a great summer and many more to come. By the way, I’ve just started secondary school and we’ve just resumed YPAG. Let me tell you what happened at our September YPAG meeting: A researcher came in to speak to us about about the risks of congenital hypothyroidism and the results […]

Jude Starbeam by Oceiah London YPAG

The On the Button theatre invited YPAG members on 28 July 2018 to watch their new play Jude Starbeam, give our feedback on how the audience responded to the play and help the company think about whether the research element in the production made sense. GOSH has been working with the theatre company to help […]

London YPAG July 2018 meeting update by Alexis

Hello, I hope you are all well. I am going to tell you about our last meeting which was on the 7th of July two days before my birthday, so I brought in some cake! The first person who came in to speak to us was Frankie, she was researching about Rasmussen’s Encephalitis (it’s very […]

GOSH Biomedical Research Centre Family Fun Day October 20 2018

GOSH YPAG members took part in this year’s Family Fun Day for research held in the Institute for Child Health. They hosted a YPAG stall meeting other children and young people to tell them about their work and also joined up with the Clinical Research Facility team to help carry out vegetable biopsies!

Kent, Surrey and Sussex YPAG meeting on 15 September 2018

14 young people turned up after the summer break, including Malak who, having turned 8 years old a couple of days earlier, was able to join her older brothers Mustafa and Marwan. Professor Paul Seddon welcomed the young people and the Parents and Carers and reminded everyone of the way in which YPAG operates (ground […]

Giving children and young people a voice in matters that concern them

An exciting new project that engages children and young people in research activities that concern them – a blog written by Lydia Brady (Member of GenerationR Liverpool YPAG)

A parent’s view of attending the International Children’s Advisory Network (iCAN) Summit – Edinburgh 2018

Reflections after attending the International Children’s Advisory Network (iCAN) Summit 2018 – a Parent’s view. Read more….

Parent’s required for Paediatric Intensive Care Unit study

Are you a parent whose child has been admitted to a Paediatric Intensive Care Unit (PICU) and required being tube fed through their stomach in the last 3 years? Read more …..

London YPAG – June 2018 meeting update by Alexis and Luella

Read the latest blog from London YPAG ‘s meeting in June…

Creating a research Glossary with young people for young people

Creating a research glossary with young people for young people to help them understand research terms

Creating a paediatric research culture with children and young people at its heart

Young Research Ambassador’s Luca and Fathima promoting the role of young people in the design of health research to Health Research Authority Staff..

London YPAG March 2018 meeting update from Alexis

Read about the latest GOSH YPAG meeting in March by Alexis

Our first Parent and Carer Research Forum Meeting

Welcome to the first blog of the Alder Hey Clinical Research Facility, Parent and Carer Research Forum.

London YPAG Meeting – Alexis’s story

Hi guys,

I haven’t written in a long time as I have had 11+ exams and the Christmas holidays. I hope you are ok and received all your favourite things from Santa!, let me tell you a bit about the Young Persons Advisory Group’s last meeting

New Youth & Family Participation Officer for Alder Hey Clinical Research Facility

Meet Sammy, Youth and Family Participation Officer for Alder Hey Clinical Research Facility.

Great Ormond Street Hospital Biomedical Research Centre Family Fun Day

  Did you know that on the 21st of October 2017 Great Ormond Street Hospital Biomedical Research Centre had a Family Fun Day ? If not, I will tell you about it, as I was a volunteer! At the entrance, there were some people asking for feedback on how the Family Fun Day was for […]

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

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.