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 […]
Update: We have had a lot of interest in the group which means that unfortunately we are not currently able to accept any new applications. If you would like to be informed when we have spaces available for new group members please email us at firstname.lastname@example.org The Hertfordshire young people’s advisory group (Herts YPAG) is […]
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 […]
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 […]
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 […]
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 […]
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
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 […]
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 […]
Young Research Ambassador’s Luca and Fathima promoting the role of young people in the design of health research to Health Research Authority Staff..
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 […]
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 […]
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 […]
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.