Liverpool YPAG

The group provides a forum for young people to learn about, and comment on, various aspects of paediatric research and clinical trials.

All of us want to help researchers to improve the development and delivery of health research.

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How we work

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The Liverpool group was set up in 2006 and currently has around 14 young people aged between 13-19yrs old. Some of us have experience of taking part in health research, have experience of living with a condition or disability, or have a general interest in learning about medicine/research/science.

Until 1st April 2015 the group was funded by the National Institute for Health Research (NIHR) Clinical Research Network: Children. The group is now funded by NIHR Alder Hey Children’s NHS Foundation Trust Clinical Research Facility (CRF).

Our meetings are held every six weeks on a Saturday. Meetings take place in the brand new Institute in the Park based at Alder Hey Children’s NHS Foundation Trust.

For young people interested in joining the group:

If you are a young person interested in joining the group after speaking with the group facilitator you will be asked to complete an Application Form to explain why you would like to be a member of the group.  You will then read and sign the Young Person’s Agreement Form so that you fully understand the role and what to expect from staff.  You will then be invited to attend the next meeting planned and you will be buddied up with an older or long-term member of the group to help you understand how the group works.

For researchers wanting to collaborate with the group:

The first thing to do is contact the group facilitator to discuss your requirements and so that the facilitator can explain the process of accessing the group, what to expect, preparation prior to the meeting and so on.  Each group may work slightly differently so this conversation is important.  Once you have decided which group is best to access (this might depend on meeting dates and availability?) you will be then asked to sign a Researcher Agreement Form similar to the Young Person’s Agreement Form, which sets out very clearly what to expect from the group and what we expect in return.  We strongly encourage researchers to attend the meetings face to face so that effective dialogue can be achieved but this can’t always be achievable so facilitators are happy to present your study to the group for review.  Several weeks after the consolation has taken place the facilitator will contact you to gain some feedback as to what happened as a result of the young people’s input, for example, did anything change to the protocol or patient information sheet as a result of the groups comments and did this go through ethics without any problems?  This is really important as it demonstrates the impact of young people’s role in the design and delivery of paediatric research.

For further information contact jennifer.preston@liverpool.ac.uk

Dates of our next meetings are:

10th June 2017

29th July 2017

16th September 2017

21st October 2017

25th November 2017

16th December 2017

 

Some of the activities we have been involved in

Woring as a groupWe have had lots of researchers come and visit our group so we can support their studies. In 2014 the National Children’s Bureau (NCB) undertook an evaluation of the NIHR CRN: Children, Consumer Involvement Strategy which the activities of the National Young Person’s Advisory Group (Liverpool, London, Nottingham, Birmingham, Bristol) contributed to. In 2013-2014 we were involved in over 68 research activities.

Since 2006 the group have taken part in over 100 separate meetings, activities and events. All meetings have predetermined activities and agendas to support projects that contribute to a national and local agenda. All members are given the opportunity to present at National and local events to promote the involvement of young people in research activities to include presenting at National meetings organised by the NIHR CRN: Children; Royal College of Paediatrics and Child Health (RCPCH); Clinical Research Facility Open Days; NIHR ‘I Am Research’ events and Pharmaceutical meetings such as the Ethical Medicines Industry Group (EMIG) click here to see a blog written about this event.

Some of our achievements this year:

  • Worked with 22 research projects, including 10 industry sponsored studies
  • Produced a poster for the International Children’s Advisory Network (iCAN) Summit
  • Five members of the group attended the iCAN Summit in Barcelona, read Simon’s blog
  • Attended the European Medicines Agency to present about the importance of involving young people in health research design
  • Young Patient Research Ambassador organised and facilitated another Raising Awareness of Invisible Illness (RAiiSE) workshop with young people, teachers, and parents. Read Sophie’s blog for more information
  • Young Patient Research Ambassador and Mum attended a charity event to raise funds for Alder Hey Children’s Charity and raise awareness of research undertaken at the hospital
  • PPIE Manager delivered a training session for the Young European Patients Forum (EPF) in Milan about research ethics and conflict of interest, click here to see the slides
  • Young Patient Research Ambassador won an award at the NIHR North West Coast annual awards ceremony for ‘outstanding contributions to patient and public involvement’ click here for the highlights of the night
  • Supported a Statement of aspiration: improving research by involving children and young people following a meeting hosted by the Nuffield Council of Bioethics
  • GenerationR included in the Patient Focused Medicines Development (PFMD) engagement toolkit to promote and highlight the model for engaging and involving young people in health research

For more information about our activities read our 2016-17 Annual Report.

 

In our own words

Luca Wetherall, 15

I joined the group because I wanted to develop my knowledge of Biology and clinical research. It helps in all aspects of my life as it helps me develop skills in literacy and debating as well as medical skills.

Ruby Wallis, 15

I joined the group when I was 9  I joined the group though friends   because I was interested in medicine and interested in pediatric research  and helping research  develop.

Fathima Manaal, 16

I joined the Young Persons Advisory Group two years ago in hope to learn more about children’s involvement in research. I have learnt so much and I feel as if it will benefit my studies in the future since I want to study psychology and go on to studying at university.  I love the idea that our work helps to improve patient information. I am now more aware about the involvement of children in research.

Lola Stubbs, 13

I joined the group when I was 7 I joined the group because my mum did a presentation and I was intrigued to help children in the hospital and help with patient information leaflets.

Get in touch

To find out further information about the group contact Jenny Preston, Patient and Public Involvement & Engagement Manager, Alder Hey Children’s NHS Foundation Trust on 0151 252 5435. Or request an application form by emailing:

Jennifer.preston@liverpool.ac.uk

University of Liverpool, Institute in the Park, Alder Hey Children’s NHS Foundation Trust, Eaton Rd, Liverpool, L12 2AP.

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