Liverpool YPAG

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

The group helps 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. Members either 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.

The group is funded by the NIHR Alder Hey Children’s NHS Foundation Trust Clinical Research Facility (CRF) and forms a major part of the Patient and Public Involvement and Engagement (PPIE) activities highlighted in our PPIE Strategy for 2017-2022.

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:

For more information about the group, read our new leaflet.  If you are interested in joining the group please complete the following 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 or jenny.ainsworth@liverpool.ac.uk

Dates of our next meetings are:

23rd June

15th Sep

13th Oct

24th Nov

Dec TBC (Christmas Party)

19th January (combined meeting with UoL)

Feb TBC

 

Our research

Some of the activities we have been involved in 2017-2018

We have had lots of researchers come and visit our group so we can support their studies.

Some of our achievements this year:

  • Worked with 20 research projects, including industry sponsored studies
  • Undertook a project to explore the impact of young people’s involvement on health research
  • Three young people linked to GenerationR attended the iCAN Summit in Florida, read Jenny’s blog and Simon Stones blog 
  • Distributed pilot Raising Awareness Survey’s across UKCRF’s targeting adults, staff, families and young people.  The purpose of the surveys was to assess stakeholders views on accessing information about research in NHS Organisations. A summary of the results was published for ICTD during May 2017.
  • Attended various meeting such as the European Medicines Agency (EMA) to take part in patient training sessions about the role of patients in EMA activities

For more information about our activities read our 2017-2018 Annual Report

Read the 2016-17 Annual Report.

 

Liverpool YPAG members

Get in touch

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.

Latest from Liverpool YPAG

Girl with wings

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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….

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