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8,766 days to change a life

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This presentation was delivered as part of a seminar to the Child Health Evaluative Sciences (CHES) Research Group, based at The Hospital for Sick Children (SickKids) in Toronto, ON, Canada. The presentation focused on the importance and some of the practicalities of involving young people in research.

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8,766 days to change a life

  1. 1. 8,766 DAYS TO change A LIFE
  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. TELL ME AND I forget TEACH ME AND I remember INVOLVE ME AND I learn
  4. 4. A LITTLE BIT ABOUT ME My journey with ill health
  5. 5. 1996 Diagnosed with juvenile idiopathic arthritis aged 3 2008 Diagnosed with Crohn’s disease aged 14 2012 Diagnosed with fibromyalgia aged 18
  6. 6. The basics Let’s revisit the fundamentals of patient and public involvement and engagement
  7. 7. 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.
  8. 8. THINKING 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
  9. 9. THINKING research 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
  10. 10. REMEMBER TO individualize OPPORTUNITIES Diagnosis Denial Anger and frustration Adapting Acceptance Living life to the full
  11. 11. RESEARCH empowers ME, AND OTHERS, 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
  12. 12. 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
  13. 13. 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. www.invo.org.uk
  14. 14. 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 facing patients and carers
  15. 15. How can we involve young people in research?
  16. 16. 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 prioritizing 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.
  17. 17. your office LET’S HAVE A LOOK AT WHAT’S ALREADY OUT THERE
  18. 18. www.icanresearch.org 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
  19. 19. http://bcchr.ca/kidscan/home The KidsCan Young Persons Advisory Group helps young people learn about research work directly from research teams. They are able to share their views with the researchers, supported by their personal experience and knowledge. The advice directly influences all phases of inquiry including the development of research questions, methods, recruitment plans, and strategies for results dissemination. Vancouver, BC
  20. 20. www.savvy.coop Organisations have questions. Patients have answers! The MATCH.COM® of patient insights
  21. 21. www.wegohealth.com 100k+ Patient Leaders - advocates, influencers and experts - helping others and transforming healthcare
  22. 22. www.raiise.co.uk 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.
  23. 23. 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…
  24. 24. 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
  25. 25. 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!
  26. 26. IF YOU DON’T LIKE SOMETHING, change IT My involvement in research as a young person has inspired me to actively make a difference… Place your screenshot here
  27. 27. 8,766 DAYS
  28. 28. 24 YEARS TO INVOLVE, EMPOWER AND TRANSFORM THE LIVES OF YOUNG PEOPLE IN CANADA AND AROUND THE WORLD
  29. 29. The ones who are crazy enough to think they can change the world are the ones that do!
  30. 30. thanks! ANY QUESTIONS? Feel free to get in touch! @SimonRStones simon@simonstones.com www.simonstones.com

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