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Breaking barriers, embracing expertise: When patients become people in research


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This presentation was delivered during the 'Participation in healthcare settings' session of the 6th Children's Research Network for Ireland and Northern Ireland Conference.

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Breaking barriers, embracing expertise: When patients become people in research

  1. 1. Breaking barriers, embracing expertise: When patients become people in research 6th Children’s Research Network for Ireland and Northern Ireland Conference
  2. 2. Hello! I am Simon Stones Patient leader. Advocate for others. Expert by experience. Charity representative. Researcher in training. @SimonRStones
  3. 3. Research is the best, and most underused treatment, that exists in society. “
  4. 4. THE BASICS What is patient and public involvement in research?
  5. 5. “ When patients, carers and members of the public are active partners in research, rather than the ‘subjects’ or participants of research. It is about doing research with or by patients, carers and the public, not doing research to patients, carers and the public.
  6. 6. Participation, engagement and involvement in research must be individualised ◇ Young people are on a journey. ◇ Families are also on a journey. ◇ Thoughts, emotions and experiences change along that journey. Coming to terms with condition(s)Denial Anger and frustration AcceptanceAdapting Living life to the full
  7. 7. 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. Life, health and wellbeing extends beyond the hospital Founded by Sophie Ainsworth Association of Colleges’ Young Student of the Year 2017
  8. 8. Research empowers me, and others, to take control, To learn about our conditions To learn about guidelines To develop skills and techniques To find support from peers To grow in confidence
  9. 9. Young people and their families There needs to be closer collaboration Patient organisations and charities Health and education professionals, researchers, industry and government Ensuring scientific and technical excellence Improved understanding of proposals through technical insight Ensuring relevance Accountability Understanding of the real issues facing patients and carers
  10. 10. ◇There are at least 793 children waiting to see a consultant rheumatologist in Ireland. ◇The national average wait time in 2016 was 169 days. ◇226 children have been on the outpatient waiting list for more than 18 months. ◇iCAN is a parent-run network providing support, information and advocating for best care for those affected by juvenile arthritis. Organisations are working with young people and families, day in, day out Ireland is lacking in care and treatment for children who suffer from arthritis, with care rated as the 2nd worst in Europe.
  11. 11. Think research at every opportunity • 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
  12. 12. When should we involve young people in research? Developing ideas and prioritising research questions Designing research, applying for funding and ethics Conducting, analysing and disseminating research Providing and receiving training and development opportunities
  13. 13. How can we involve young people in research? One-to-one discussions Focus groups and discussion groups Co-researchers / research partners Social media Advisory and reference groups Through existing groups
  14. 14. How can we involve young people in research? ◇University Research User Groups ◇Research Consortium Stakeholder Groups e.g. IMI ◇NIHR GenerationR and Patient Research Ambassadors (UK) ◇European Young People’s Advisory Group Network (eYPAGnet) ◇International Children’s Advisory Network (iCAN) ◇INVOLVE and People in Research (UK) ◇Children’s Research Network ◇Patient organisations and charities
  15. 15. Young people influencing the way that research is conducted
  16. 16. Patient research ambassadors: Families working locally, nationally, and internationally to promote research.
  17. 17. The TRECA study: Trials engagement in children and adolescents 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.
  18. 18. The SIRJIA study: Steroid induction regimens in juvenile idiopathic arthritis SIRJIA will determine whether a future study comparing different steroid treatments is possible to do with young people living with juvenile idiopathic arthritis (JIA). Young people were involved in identifying the primary outcome measure for the study.
  19. 19. Give young people a chance. They may just surprise you. “ Credits: SlidesCarnival