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Paving the way for a brighter future: Opportunities to involve young people in healthcare research across Greater Manchester

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A presentation delivered at The University of Manchester's Child Health Research Network's workshop on devolution in Greater Manchester. The aim of the overall workshop was to explore the implications and opportunities for child health and wellbeing research in Greater Manchester. Here, I discussed the importance of involving young people and their families in co-designing services and research.

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Paving the way for a brighter future: Opportunities to involve young people in healthcare research across Greater Manchester

  1. 1. Paving the way for a brighter future: opportunities to involve young people in healthcare research across Greater Manchester Simon Stones @SimonRStones
  2. 2. 113, 250Children aged 16 years and under living in Manchester Manchester City Council Forecasting Model (2016)
  3. 3. “YOU’RE NEVER TOO YOUNG TO CHANGE THE WORLD”
  4. 4. × One size does not fit all. × People want personal and community support structures. × Mental health is of equal importance to physical health. × Self-confidence and self-efficacy are necessary qualities to change health-related behaviours. × People highlighted the important legislative powers of local government, and the role of public sector organisations in creating the right conditions for people to take charge of their own health.
  5. 5. There are more than 1 million children in the UK who have a long- term, or even lifelong, illness and need medicines for the foreseeable future.
  6. 6. SELF What happens during childhood affects health and wellbeing in later life. We must support young people to be well equipped to deal with life’s challenges.
  7. 7. Ensure full implementation of NICE and SIGN asthma guidelines across the UK. Improve asthma education for children, families and healthcare professionals. Improve training for healthcare professionals in working with young people. Deliver school responsibilities to children with asthma (e.g. implementation of statutory guidance in England, compared with other nations). Asthma
  8. 8. Ensure joined-up care which meets the wider needs of children, including appropriate transition to adult diabetes services. Ensure full implementation of updated NICE guidance for HbA1c levels. Improve diabetes education for children, young people, families, and healthcare and educational professionals to decrease stigma and discrimination. Diabetes
  9. 9. If You don’t like something, change it… My involvement in research as a young person has inspired me to actively step up and make a difference… www.ismartresearch.wordpress.com
  10. 10. What do we need to do?
  11. 11. Young people, their families Health and education professionals, researchers and industry The third (voluntary) sector
  12. 12. • Where young people, their families and other members of the public are actively involved in research projects and in research organisations.Involvement • Where information and knowledge about research is provided and disseminated to young people, for example, a science fair or open day. Engagement • When young people and their families take part in a research study (formally referred to as ‘subjects’). Participation
  13. 13. × The NIHR expects patient and public involvement to be embedded throughout all research proposals. × It is increasingly being recognised as important by other major funders, and in some cases is a requirement. × The NHS Health Research Authority will ask how you will involve patients and the public in your research. × A budget for patient and public involvement must be costed and should be ring-fenced.
  14. 14. Set research priorities Delivering training to researchers Review funding applications Facilitate participation Monitor and advise Evaluate and disseminate outcomes Young people and their families Developing an idea/ research question Developing a research application Carrying out research Dissemination and implementing
  15. 15. One-to-one discussions Focus groups and discussion groups Co-researchers / research partners • University Research User Groups • Consortium Stakeholder Groups • NIHR GenerationR • NIHR Patient Research Ambassadors • eYPAGnet • International Children’s Advisory Network • INVOLVE • NIHR CRN Clinical Studies Groups • Patient organisations / charities Through existing groups and social media Advisory and reference groups
  16. 16. Patient Research Ambassadors: Young people working locally, nationally, and internationally to promote research.
  17. 17. Patient Research Ambassadors: Families working locally, nationally, and internationally to promote research. bit.ly/patientresearchambassador
  18. 18. Manchester’s young people’s research advisory group Facilitated by the Public Programmes team at the Clinical Research Facility, this new group will enable young people to shape research across Greater Manchester.
  19. 19. YOUR RHEUM A Manchester-based group with a national reach, enabling young people to influence paediatric and adolescent rheumatology research. A group for 11 to 24 year olds across the UK with diagnosed rheumatic conditions to advise, input and shape current adolescent and young adult rheumatology research.
  20. 20. www.theproudtrust.org www.manchesteryouthcouncil.co.uk www.thefactoryyz.org www.wiganyouthzone.org www.manchesteryounglives.org.uk www.42ndstreet.org.uk www.m13youthproject.org.uk www.manchestercommunitycentral. org/young-people-network-pagewww.gmyn.co.uk www.greatermanchester-ca.gov.uk/ Youth Combined Authority (YCA) Some of the many groups in Manchester…
  21. 21. The NIHR-funded TRECA study has developed multimedia information (MMI) resources with text, animations, videos and diagrams to inform children, adolescents and parents about clinical trials.
  22. 22. “GIVE YOUNG PEOPLE A GREATER VOICE. THEY ARE THE FUTURE AND THEY ARE MUCH WISER THAN WE GIVE THEM CREDIT FOR.”
  23. 23. THANKS!Any questions? You can find me at @SimonRStones & simon@simonstones.com Credit: SlidesCarnival

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