The Impact of Young Ambassadors on Medicine Development

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1 The Impact of Young Ambassadors on Medicine Development Jenny Preston: Patient and Public Involvement Lead, NIHR Clinical Research Network Coordinating Centre Sammy Ainsworth: Patient Research Ambassador

2 Who are we? Clinical Research Network

3 Overview The NIHR Health Research System Young People s Rights How we work with young people IMPACT Take home messages Clinical Research Network

4 The NIHR Health Research System Clinical Research Network

5 My role as a Patient Research Ambassador Clinical Research Network

6 Young people have rights Article 12. Every child and young person has the right to express his or her views freely in all matters affecting them Clinical Research Network

7 You have the right to be involved in discussions and decisions about your healthcare and to be given information to enable you to do this - NHS Constitution Clinical Research Network

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23 The role of YPAGs Learn about health and clinical research in monthly meetings to educate young advocates Support and work in partnership with researchers in the design and delivery of health research Provide input and collaborate with key stakeholders to promote young people s involvement in research (EMA, national agencies, pharma companies, etc.) Act as Young Patient Ambassadors for health research Clinical Research Network

24 Medicine Development Pipeline Clinical Research Network

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26 Feasibility is the study worth while? Clinical Research Network

27 Engaging with young people Clinical Research Network

28 Influence Producing the video was massively useful, and influential. We went on to create a Paediatric Trials guidebook for the company, and they reference this (and the video) whenever they are planning their Assent Forms, and also their recruitment and retention materials for their paediatric studies. Clinical Research Network

29 Assent templates Clinical Research Network

30 Age in-appropriate formulations Lack of age-appropriate formulations for children Ø Poor acceptability Ø Unlicensed/Off-label use Ø Paediatric Regulation (EMA/FDA) Frequent manipulation of adult formulations 1 Ø Medication errors Ø Dose imprecision Ø Cost Acceptable formulations for children Ø Consider dose flexibility Ø Methods to assess acceptability 1 RH Richey et al J Adv Nursing Clinical Research Network

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32 Feedback from researchers This is a particularly valuable resource for any researchers involving young people.. I was not aware of the groups existence prior to recommendations by the research ethics committee, I will certainly hope to seek their support in future studies The groups opinions where instrumental in ensuring that the study outcomes were valid, important and meaningful for young people and parents themselves Clinical Research Network

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34 Take home messages! Collaboration is key Lets work together! Don t reinvent the wheel tap into existing YPAGs (make use of the excellent resource we have) Budget appropriately to involve young people effectively Involve young people from the beginning and throughout the study not just for ethics approval Assess the impact of young people s involvement shout about it! Clinical Research Network

35 Find out more about our work Follow us on Read about our activities on Follow us on Clinical Research Network

36 Thanks! Contact us: GenerationR Livererpool YPAG Clinical Research Network