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Patient and public involvement in research: Two sides of the same coin

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This talk, about patient and public involvement in research, was delivered at the inaugural co-developed conference at University College Dublin, titled 'A collaborative approach to arthritis and rheumatic disease research'.

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Patient and public involvement in research: Two sides of the same coin

  1. 1. Patient and public involvement in research: Two sides of the same coin Simon Stones Patient Advocate, Consultant and Researcher @SimonRStones
  2. 2. 2
  3. 3. 1 Peeling back the layers 3
  4. 4. What is patient and public involvement? When patients, carers and members of the public are active partners in research, rather than the ‘subjects’ or participants of research. 4
  5. 5. What is patient and public involvement? It is about doing research with or by patients, carers and the public, not doing research to patients, carers and the public. 5
  6. 6. 6 Involvement Engagement Participation “You can’t have one without the other…”
  7. 7. 7 Throughout the research cycle
  8. 8. 8 In different types of research Research in the laboratory Finding out what needs to be researched Testing new treatmentsUnderstanding experiences Understanding behaviours
  9. 9. You can talk the talk… but can you walk the walk? 9
  10. 10. Wearing lots of hats… and spinning lots of plates! Simon the son/carer the patient 10 the patient advocate the charity trustee the researcher
  11. 11. 2 From the patient’s side 11
  12. 12. 12 3rd and 4th December 2012 Consumer Representative CSG ARUK MCRN SHARE Stratified Medicines Formulations SYCAMORE MYPAN PPI
  13. 13. What have I done!? 13
  14. 14. What do I bring to the table? 14 My expertise and experience My challenges and needs My thoughts and ideas My network
  15. 15. What I don’t bring to the table… 15 Your skills and experiences Your needs and priorities Your ‘tick’ in the box The views of ‘all patients’
  16. 16. What impact do I have on research? 16 Improving research quality and relevance Making information accessible Making research acceptable and sensitive Improving recruitment to research studies Dispelling myths about research Making research more relevant
  17. 17. What impact can research have on me? Knowledge about my health Skills to interpret evidence Learning new techniques Meeting incredible people Improving self-confidence
  18. 18. The TRECA study TRials Engagement in Children and Adolescents 18
  19. 19. Place your screenshot here International social media use study Among people with rheumatic diseases 19
  20. 20. 3 From the researcher’s side 20
  21. 21. “ 21 I’m not telling you it’s going to be easy. I’m telling you it’s going to be worth it.”
  22. 22. Place your screenshot here My PhD study Working with young people, families, healthcare professionals and charities 22
  23. 23. 23 Institutional cultures Attitudes of funders Capacity and capability
  24. 24. 24 Ethics Red tape / policies Representation
  25. 25. 25 FINANCIAL PAYMENT AND EXPENSES RECOGNITION AND APPRECIATION LOGISTICS (DAY, TIME, LENGTH OF MEETING) CONSENT AND ASSENT METHODS SAFEGUARDING
  26. 26. 26 1. Patient and public involvement is no longer just a ‘nice thing to do’. 2. Research is everyone’s business. 3. Patients, carers and members of the public must be equal partners of research teams. 4. Start early, think about every possibility, review, reflect and talk to each other. 5. Build relationships upon shared values of trust, honesty and respect.
  27. 27. 27 IMPOSSIBLE
  28. 28. “ 28 Just a big word… thrown around by those who find it easier to live in the world they’ve been given, than to explore the power they have to change it.”
  29. 29. Thank you! Any questions? You can find me at @SimonRStones & simon@simonstones.com 29
  30. 30. Useful links 30 European League Against Rheumatism https://www.eular.org European Network for Children with Arthritis https://www.enca.org International Foundation for Autoimmune and Autoinflammatory Arthritis (IFAA) https://www.aiarthritis.org National Institute for Health Research (NIHR) https://www.nihr.ac.uk/patients-and-public/ http://www.invo.org.uk Research Involvement and Engagement https://researchinvolvement.biomedcentral.com Versus Arthritis https://www.versusarthritis.org

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