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In the driving seat: Health care and research led for, and by young people


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This seminar was delivered as part of the University of Central Lancashire (UCLAN) Centre for Children and Young People’s Participation Seminar Series.

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In the driving seat: Health care and research led for, and by young people

  1. 1. IN THE driving SEAT: HEALTH CARE AND RESEARCH LED FOR AND BY YOUNG PEOPLE Part of the “What does it mean to listen to children and young people” seminar series
  2. 2. Hello! I AM SIMON STONES Award-winning patient leader. Patient and carer advocate. Expert by experience. Freelance consultant. Charity representative. Qualitative researcher. You can find me at: @SimonRStones
  3. 3. Your task YOUR ELEVATOR PITCH For once, you’re not applying for grant funding… you’re seeking the buy in from a group of young people! Use the post-in note to summarise one of your current pieces of research – you’ll have 30 seconds to win them over!
  4. 4. TELL ME AND I forget TEACH ME AND I remember INVOLVE ME AND I learn
  5. 5. A LITTLE BIT ABOUT ME My journey with ill health
  6. 6. 1996 Diagnosed with juvenile idiopathic arthritis aged 3 2008 Diagnosed with Crohn’s disease aged 14 2012 Diagnosed with fibromyalgia aged 18
  7. 7. The basics Let’s revisit the fundamentals of patient and public involvement and engagement in research
  8. 8. 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.
  9. 9. THINK research AT EVERY OPPORTUNITY • Where people are actively involved in research projects and in research organisations.Involvement • Where information and knowledge about research is provided and disseminated to people, for example, a science fair or hospital open day. Engagement • When people take part in a research study (formally referred to as ‘subjects’). Participation
  10. 10. THINK involvement AT EVERY OPPORTUNITY 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 – young people and their families are an important part of your team
  11. 11. REMEMBER TO individualise OPPORTUNITIES Diagnosis Denial Anger and frustration Adapting Acceptance Living life to the full
  12. 12. RESEARCH CAN empower YOUNG PEOPLE TO TAKE CONTROL To learn about our conditions To differentiate between evidence-informed and anecdotal guidance To develop skills and techniques To find support from peers To grow in confidence
  13. 13. IT’S MORE THAN JUST A nice THING TO DO The quality and relevance of research can be improved Information can be made more appropriate and accessible Methods can be tailored so that they are acceptable and sensitive to participants’ needs Participation can be increased Identification of relevant research questions Young people and families can be empowered
  15. 15. Your next task TALK THE TALK, WALK THE WALK Research is filled with so much jargon… more than many of us realise! Complete the activity and see whether you can explain each term in plain English, for young people!
  16. 16. DRAFT STANDARDS FOR PATIENT AND PUBLIC INVOLVEMENT 1. Inclusive opportunities - We provide clear, meaningful and accessible opportunities for involvement, for a wide range of people across all research. 2. Working together – We create and sustain respectful relationships, policies, practices and environments for effective working in research. 3. Support and learning - We ensure public involvement is undertaken with confidence and competence by everyone. 4. Communications - We provide clear and regular communications as part of all involvement plans and activities 5. Impact - We report and act on the impact of involving the public in research. 6. Governance - We ensure the community of interest voices are heard, valued, and included in decision making.
  17. 17. Young people living with health conditions and their families Patient organisations and charities Health and education professionals, researchers, industry and government CLOSER COLLABOARATION BETWEEN ALL stakeholders IS NECESSARY Ensuring scientific and technical excellence Ensuring relevance Accountability Understanding of the real issues
  18. 18. How can we involve young people in research?
  19. 19. APPROACHES SHOULD BE bespoke Existing groups There are lots of existing young person advisory groups which you can contact to support your work. Social media Social media is an invaluable tool for connecting with young people and their families. Advisory groups Establishing new advisory groups for specific projects or initiatives is a good idea if you want to establish a group you can contact more frequently. Ad-hoc focus groups Ad-hoc focus groups work well for prioritising and designing research for grant applications, especially when budgets are limited. Consultancy Meet with patient opinion leaders and charitable organisations to help them advise and shape your work. Co-researcher partnerships The gold standard is when young people and their families become co-researchers: true research partners with you.
  21. 21. 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.
  22. 22. Five groups of young people across the UK working with researchers on a variety of different projects. “We contribute to future research…” “We make new friends and build confidence” “We extend our knowledge and skills” “We have a voice and make a difference…” A new group, based in Liverpool, of parents and carers with different experiences, to support researchers on different projects. Birmingham Bristol Liverpool London Nottingham
  23. 23. VOICE UP Facilitated by the Public Programmes team at the Clinical Research Facility (based in Manchester University Hospitals NHS Foundation Trust), this new young people’s advisory group will enable young people to shape research across Greater Manchester.
  24. 24. iCAN advocates for children in healthcare globally, especially those involved in healthcare research Advocacy iCAN aims to to provide a platform for children and their families to have a voice in research An expanding network of 19 chapters across the globe, which continues to grow! Global impact Research eYPAGnet (Europe) Generation R (England) KIDS Albania KIDS Barcelona KIDS Bari KIDS Central Ohio KIDS Chicago KIDS Connecticut KIDS France KIDS Georgia KIDS Houston KIDS Kansas City KIDS Michigan KIDS Sydney KIDS Utah KidsCan (Vancouver) ScotCRN (Scotland)
  25. 25. Organisations have questions. Patients have answers! The MATCH.COM® of patient insights
  26. 26. Thousands of patient leaders - advocates, influencers and experts - helping others and transforming healthcare
  27. 27. HOW SOME ORGANISATIONS embed YOUNG PEOPLE IN THE GRANT PROCESS Triage/outline review Peer review Applicant rebuttal Application deadline Funding announcement Panel review Research and patient insight at every step in the process…
  28. 28. THE TRECA project The NIHR-funded TRECA study has developed multimedia information (MMI) resources with text, animations, videos and diagrams to inform children, young people and parents about research. Place your screenshot here
  29. 29. THE SIRJIA project Young people and families were involved in identifying the primary outcome measure for the study, as well as the inclusion/exclusion criteria, and methods of data collection. OPPORTUNITY FOR YOUNG PEOPLE WITH JIA!
  30. 30. THE iSMART project My involvement in research as a young person has inspired me to undertake some research for my doctorate, giving young people with arthritis the power to shape the support they want and need… Place your screenshot here
  31. 31. KEY INGREDIENTS FOR including YOUNG PEOPLE IN HEALTH RESEARCH Make young people feel valued Enable young people to connect with you Communicate with, not at young people Keep the momentum going Think about the practical side of things Make sure you listen and act Share feedback in a constructive and regular manner Always be flexible Have a little common sense too!
  32. 32. Give young people a greater voice. They are much wiser than we give them credit for.
  33. 33. thanks! ANY QUESTIONS? Feel free to get in touch! @SimonRStones