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…
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. […]
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?