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Tell me and I forget, teach me and I remember, involve me and I learn


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This presentation was delivered at the Glasgow Caledonian University School of Health and Life Sciences Research Seminar, to help inform the group who are currently developing their strategy for patient and public involvement and engagement.

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Tell me and I forget, teach me and I remember, involve me and I learn

  1. 1. Tell me and I forget, teach me and I remember, involve me and I learn School of Health and Life Sciences, Glasgow Caledonian University Seminar Patient and public involvement (PPI) in research: A moral imperative
  2. 2. Hello! I am Simon Stones Award-winning patient leader. Advocate for others. Expert by experience. Freelance consultant. Charity representative. Qualitative researcher. @SimonRStones
  3. 3. Research is the best, and most underused treatment in our country “
  4. 4. 1996 Diagnosed with juvenile idiopathic arthritis aged 3 2008 Diagnosed with Crohn’s disease aged 14 2012 Diagnosed with fibromyalgia aged 18 2012-2016 BSc (Hons) Biomedical Sciences 2016-2019 PhD Applied Health
  5. 5. TAKING IT BACK A STEP What is patient and public involvement in research?
  6. 6. “ 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.
  7. 7. 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 open day. Engagement • When people take part in a research study (formally referred to as ‘subjects’). Participation
  8. 8. Participation, engagement and involvement in research must be individualised ◇ Patients 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
  9. 9. 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
  10. 10. Why is PPI important, and not 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 Patients and carers can be empowered
  11. 11. Patients 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
  12. 12. ◇Fibromyalgia Action UK, based in Paisley, is the national patient organisation for people with fibromyalgia; ◇Around 160 local support groups across the England, Northern Ireland, Scotland and Wales; ◇Seek support from the charity to advise on your study, and to facilitate recruitment; ◇Over 11,100 followers on Twitter; ◇Over 12,900 followers on Facebook; ◇Over 36,000 followers on HealthUnlocked. Organisations are working with patients, day in, day out In the UK, between 1.2 and 2.8 million people are believed to have fibromyalgia, based on estimated that between 2% and 4.5% of the population have the condition.
  13. 13. Shared learning group on involvement This group aims to encourage shared learning about patient and/or carer involvement between national medical research sector organisations in the UK
  14. 14. When should we involve 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
  15. 15. How can we involve 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
  16. 16. How can we involve people in research? ◇University / NHS-based Research User Groups ◇Clinical Network Patient Focus and Public Involvement Groups e.g. NHS Greater Glasgow and Clyde ◇Research Consortium Stakeholder Groups e.g. IMI ◇NIHR GenerationR and Patient Research Ambassadors ◇European Young People’s Advisory Group Network (eYPAGnet) ◇International Children’s Advisory Network (iCAN) ◇INVOLVE and People in Research (UK) ◇Patient organisations and charities
  17. 17. Application deadline Triage/Outline review Peer review Applicant rebuttal Panel review The review and evaluation of grant applications Patient Insight Research Insight
  18. 18. “ Never use a long word when a short one will do… and don’t use jargon for the sake of it!
  19. 19. Some examples… • Elucidate = find out • Analgesics = painkillers • Novel therapeutics = new treatments • Molecules XYZ, ABC and EFG = a number of molecules • Mechanical loading = the way weight is placed on a joint • SNPs = naturally occurring genetic differences • Cultured in vitro = grown in the laboratory
  20. 20. Patient research ambassadors: Families working locally, nationally, and internationally to promote research.
  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. Life, health and wellbeing extends beyond the hospital Founder and CEO: Sophie Ainsworth Association of Colleges’ Young Student of the Year 2017
  22. 22. 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.
  23. 23. 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 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.
  24. 24. Patients won’t be part of the conversation in the future… they’ll be leading it. “ Credits: SlidesCarnival
  25. 25. “ A task for you Tweeters… Describe one thing that you’re going to do differently after today’s seminar with regards to involving patients and the public in research. Tag @SimonRStones and @GCUSHLS
  26. 26. Thanks! Feel free to get in touch… 07761 058920 @SimonRStones