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Seven Years To Transform

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This presentation was delivered at NIHR INVOLVE Diversity and Inclusion Working Group meeting on Tuesday 02 April 2019 in London, England, United Kingdom.

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Seven Years To Transform

  1. 1. SEVEN YEARS TO TRANSFORM SIMON R. STONES @SimonRStones
  2. 2. 1993 2012 - Fibromyalgia 2008 – Crohn’s disease 1996 – Juvenile idiopathic arthritis and hypermobility syndrome 1951 1983 – Polymyositis, lupus, TB 2018 – Pancreatic cancer 2014 - Nonalcoholic steatohepatitis 2006 – Bilateral hip replacements
  3. 3. WHERE IT ALL BEGAN A meeting at Liverpool Lime Street station!
  4. 4. 4
  5. 5. 2012 National Institute for Health Research (NIHR) Clinical Research Network (CRN): Children/Versus Arthritis Paediatric Rheumatology (PRh) Clinical Studies Group (CSG) What’s a consumer representative? What am I supposed to do? National Advisory Group
  6. 6. 2013 MobApp Project How do I ‘represent’ young people with JIA? How do I get to be as ‘good’ as these other researchers? National Research Project
  7. 7. 2014 Transitional care for young people with juvenile-onset rheumatic diseases I get to go to Zurich! How am I going to afford this!? How much time do I need to spend preparing? International Recommendations
  8. 8. 2015 EULAR Young PARE Which organisation do I represent? Is this what care is like across Europe? How do I fit in among these 200 delegates? International Advisory Group
  9. 9. 2016 University of Leeds Which hat should I wear? Why am I here? PhD
  10. 10. 2017-2019 Take offEULAR ENCA/PReS EPF RAiISE iCAN FMA UK/ENFA
  11. 11. My involvement in research has sparked a whole new interest and passion in my life… SPARKING INTERESTS
  12. 12. 12
  13. 13. ONE CHANCE DISCUSSION ONE SINGLE MEETING…
  14. 14. 150+ PUBLICATIONS 60 SPEAKER INVITATIONS 69 CONFERENCES 46 STAKEHOLDER/ADVISORY COMMITTEES 32 REVIEWER POSITIONS 29 RESEARCH STUDY POSITIONS 22 INVITED WORKSHOP FACILITATOR ROLES 15 GRANTS AND BURSARIES 8 EDITORIAL POSITIONS 4 MANAGEMENT BOARD POSITIONS 2 GRANT FUNDING PANELS 1 TRANSFORMED LIFE
  15. 15. “ THE POSITIVES People Experiences Opportunities Bringing about change
  16. 16. “ THE NEGATIVES Critics Short sightedness Institutions Labels
  17. 17. “1. We make people fit into existing structures. Shouldn’t it be the opposite way around? 2. It’s time to truly value the voice of people with lived experience, just like we value the voice of employees. 3. We need to ask ourselves, why are we really doing this? 4. Don’t judge, or criticise. Let’s nurture and support. We’re all heading in the same direction, after all…
  18. 18. 18 Research has… Made me a better person Made me an empowered patient Helped me to fight to save my mum’s life
  19. 19. “ We have the chance to transform lives. I am living proof of what a difference it can make.

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