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 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 can develop and improve in the future. A group of eyeYPAG members (the young evaluators) […]
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 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 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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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. […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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, […]
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 […]
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
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.
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!
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 […]
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 […]
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 […]
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 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!
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 […]
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)
Reflections after attending the International Children’s Advisory Network (iCAN) Summit 2018 – a Parent’s view. Read more….
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 …..
Young Research Ambassador’s Luca and Fathima promoting the role of young people in the design of health research to Health Research Authority Staff..
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
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 […]
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…
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.
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.
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 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
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 […]
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 […]
GenerationR young people and Patient Research Ambassador talking about exciting things happen when you involve young people to promote better research for better healthcare.
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 …
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 […]
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.
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 […]
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 […]
Esme member of the London YPAG Investigates into Schools and Research: Is there room for critical thinking about research claims in the school curriculum?