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Ensuring research really does involve the young person

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This presentation was delivered during a session discussing the ethics of conducting research with children and young people. The presentation emphasises the importance of involving children, young people and their families in the design and conduct of research, in order to make it more relevant.

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Ensuring research really does involve the young person

  1. 1. Ensuring research really does involve the young person Jenny Preston: Patient and Public Involvement Manager: NIHR Alder Hey Clinical Research Facility Simon Stones: Young Patient Research Ambassador @NIHR_PRAI @GenRYPAGs
  2. 2. Clinical Research NetworkClinical Research Network Involving young people in health research • Involving patients, carers and the public, who have personal experience of or an interest in a health condition(s), in research or research related activities • An active partnership between patients and the public and researchers, doctors and other NHS staff Patient and public involvement
  3. 3. Clinical Research NetworkClinical Research Network The Health Research Authority (HRA) and the UK Health Departments are committed to an environment where: “patients, service users and the public are given, and take, the opportunity to participate in health and social care research and to get involved in its design, management, conduct and dissemination, and are confident about doing so” Health Research Authority
  4. 4. Clinical Research NetworkClinical Research Network “When we talk about ‘involvement’ in research, we mean actively getting involved in the research process, rather than being participants of the research” HRA True involvement in research
  5. 5. Clinical Research NetworkClinical Research Network The research process
  6. 6. Clinical Research NetworkClinical Research Network There’s no one size that fits all People should be involved in research in a meaningful and collaborative manner, not for the sake of involvement because it’s the hot thing to do in research these days...
  7. 7. Clinical Research Network Children
  8. 8. Clinical Research NetworkClinical Research Network Learn about health and clinical research in monthly meetings Support and work in partnership with researchers in the delivery of health research Provide input and collaborate with key organisations to promote young people’s involvement in research (RCPCH, EMA, HRA) The role of GenerationR YPAGs
  9. 9. Clinical Research Network Children What do we get from the group? group?
  10. 10. Clinical Research NetworkClinical Research Network Involving young people in health research ● Talk to them about research in our words - it helps them think about it differently. ● Advise them on whether their study sounds good for young people - tell them what’s important to us. ● Help them with the patient information sheets they produce to explain the study for young people. ● Reassure researchers that it is a good study and not to be afraid to ask young people and families to take part. ● Demystify research so it doesn’t seem scary. How young people help researchers
  11. 11. Clinical Research NetworkClinical Research Network Involving young people in health research ● Getting the results fed back to participants of studies. ● Knowing your helping future generations. ● Hearing whether our feedback helped the research. ● Helping young people be more educated about things. that might impact on them personally in the future. What’s important to young people
  12. 12. Clinical Research Network Children
  13. 13. Clinical Research NetworkClinical Research Network The TRECA study: TRials Engagement in Children and Adolescents A promising alternative is to printed information sheets (PIS) is to use multimedia information (MMI) resources. MMIs are websites with a combination of animation, text, diagrams and video. They can be viewed on a computer, smartphone or tablet. The TRECA study is funded by the National Institute for Health Research (NIHR HS&DR 14/21/21).
  14. 14. Clinical Research NetworkClinical Research Network Involving young people in health research ● When it comes to information sheets, visual appearance is just as important as the content. ● Think of other ways to inform young people and families about research. ● Build an easily understandable research story. ● Don’t use jargon for the sake of it. ● Never use a long word, when a short one will do. It doesn’t matter to me that you are using interpretative phenomenological analysis to explore my lived experience – I’m more interested in why you want to speak to me, and how what I will say could make a difference… Some top tips...
  15. 15. Clinical Research NetworkClinical Research Network ● www.generationr.org.uk ● Find out more about health research through - learn zone ● Massive Online Open Course - Improving healthcare through clinical research. Register your interest now ● Patient Education - The A to Z of medicines development. EUPATI Toolkit Some helpful links

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