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Table 2 Models of Good Practice in the UK

From: Study protocol: Determining what young people with rheumatic disease consider important to research (the Young People’s Opinions Underpinning Rheumatology Research - YOURR project)

Name of initiative Website
Children’s Specialty theme in the National Institute for Health Research (NIHR) Clinical Research network [45, 46]
This initiative is supported by a national young person’s advisory group called GenerationR (R for Research) which is made up of several regional groups across the country which aim to support the design and delivery of paediatric research in the UK.
Centre for the Development and Evaluation of Complex Interventions for Public Health Improvement [47]
DECIPHer is a UKCRC Public Health Research Centre of Excellence. It brings together leading experts from a range of disciplines to tackle public health issues, with a particular focus on developing and evaluating multi-level interventions that will have an impact on the health and wellbeing of children and young people. Public involvement is undertaken in the Centre through employing a full time ‘Involving Young People Research Officer’ who supports and organises two groups: a young people’s advisory group (ALPHA: Advice Leading to Public Health Advancement) and a Public Involvement Steering Group made up of academics and practitioners with a sound understanding of public involvement.
Royal College of Paediatrics and Child Health [48]
& Us is the RCPCH’s platform for children, young people, parents, carers and families to join the RCPCH in improving healthcare for young patients. The aim is to provide a variety of and flexible ways for, people to share their views and experiences, which will ensure the patient voice is at the heart of our work. An Infant, Children and Young Persons Research Charter is currently being developed as part of this work.
Association for Young People’s Health [49]
AYPH is a progressive charity and membership forum, creating a focus for everyone working in the field of young people's health across the UK. They are currently working to develop a youth-led research agenda for health.
University of Central Lancashire - Centre for Children and Young People’s Participation [50]
Based at The University of Central Lancashire’s School of Social Work, and founded in 2008 by Professors Nigel Thomas and Andy Bilson, the Centre for Children and Young People’s Participation is the only research centre devoted to this theme, and has an international reputation for research and knowledge exchange. The Centre also specialises in supporting children and young people to propose, plan and carry out their own research, as well as being partners on adult research projects.
Transition - The United Progression (UP) - Young people’s Involvement Group [51]
UP is a working group of young people with health needs, or personal experience of young people’s health needs, who work with the Project Management Board of the 5 year NIHR Transition Research Programme examining how health services can contribute most effectively to facilitating successful transition of young people with complex health needs from childhood to adulthood. UP was established to advise the full programme in addition to developing for their own youth led work stream.
Participation Works [52]
Participation Works is a consortium of seven national children and young people's agencies that enables organisations to effectively involve children and young people in the development, delivery and evaluation of services that affect their lives.
National Youth Agency [53]
The National Youth Agency’s Young Researcher Network (YRN) has launched toolkits to help young people undertake youth-led research and promote their findings
Youth Health Talk (involvement in clinical trials) [54]
This website enables patients to share their experiences online. ‘’ and ‘’ come from a unique partnership between The DIPEx charity and Oxford University’s Department of Primary Care.
National Children’s Bureau [55]
The NCB involve young people in their research because they believe it improves the quality of the research and makes it more relevant and more persuasive for policymakers and practitioners. This includes training of young people for such involvement.
Council for Disabled Children [56]
The VIPER project, consists of 16 young disabled people, aged 12 to 22, from across England. Resources developed as part of this project are available on the website
INVOLVE is funded by the National Institute for Health Research in the UK (NIHR) to support public involvement in NHS, public health and social care research.
Nuffield Council on Bioethics [54]
The Nuffield Council on Bioethics is independent body advising policy makers and stimulating debate in bioethics and have recently specifically addressed issues specific to children and young people