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Patient and Public Involvement in Research: From Rhetoric To Reality

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It’s an exciting time in health research. As a broader view of what constitutes expertise and research evolves, barriers between the research community and the public are eroding, paving the way for the growth of patient and public involvement (PPI) in research.

PPI occurs when individuals meaningfully and actively collaborate in the governance, priority setting, and conduct of research, as well as in summarizing, distributing, sharing, and applying its resulting knowledge. PPI is an important step in ensuring that the real life experiences of patients are considered in decision-making processes around research.

Publicada em: Saúde e medicina
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Patient and Public Involvement in Research: From Rhetoric To Reality

  1. 1. Patient and Public Involvement in Research: From Rhetoric to Reality 16th Annual Psychology, Health and Medicine Conference Maynooth University 22 March 2019 Marie Ennis-O’Connor tweet me @JBBC #phm2019 #loveirishresearch
  2. 2. “Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.” Susan Sontag, Illness As Metaphor, 1978
  3. 3. 10 QuestionsTo Frame Our DiscussionToday 1. What do we mean by patient and public involvement in research? 2. Why do patients engage with PPI? 3. How does PPI benefit researchers? 4. What is the value of PPI? 5. How do you plan to include PPI in your research? 6. Who do you plan to include? 7. What are some key practical considerations in PPI research? 8. Which barriers and challenges do we need to overcome? 9. How can we move from tokenistic to meaningful engagement? 10. How should we measure PPI?
  4. 4. Q 1 What do we mean by patient and public involvement in research (PPI)?
  5. 5. PPI occurs when individuals meaningfully and actively collaborate in the governance, priority setting, and conduct of research, as well as in summarizing, distributing, sharing, and applying its resulting knowledge.
  6. 6. Spectrum of Engagement
  7. 7. TO For With “There is a critical difference between going through the empty ritual of participation and having the real power needed to affect the outcome of the process." (Arnstein)
  8. 8. Q 2 Why do patients engage with PPI?
  9. 9. “It gives me a sense of self- esteem… to be able to use a little bit of my experience is very important, you feel valued and that you can contribute something.” - Michael K. “I have enjoyed being part of things and it has given new meaning to my life and helped when I was feeling down. It has helped me communicate again with the world.” - Liz G..  Want to give back  Quest for answers  Understand research better  Want to change an unmet need  Gain personal meaning  Be a voice for those who are voiceless  Sense of purpose  Feeling valued  Increased confidence & self-esteem
  10. 10. For patients, involvement is more than just about the research. It is a commitment to advancing patient care and outcomes for other patients and families experiencing similar issues – both present and future.
  11. 11. Q 3 How does PPI benefit researchers?
  12. 12. (i) Funding Fulfilling funding requirements
  13. 13. (ii) Publication Fulfilling publication requirements
  14. 14. Q 4 What is the broader value of PPI?
  15. 15. (i) Democratic Right Moral obligation and accountability
  16. 16. (ii) Patient Centred Care Model Evidence based care
  17. 17. (iii) Better Quality Research More relevant & responsive to patient needs  Broadens the research agenda beyond that set by health professionals and researchers.  Better alignment of research objectives through priority-setting activities.  Improves quality of search designs.  Improves informed consent processes.  Better insight into research gaps.  Wider impact and application of research findings.
  18. 18. As a researcher, I engage in PPI because I believe it to be best practice. For my research to be as relevant as possible and the best value for money it makes sense for me to engage with and learn from the people who live with these diseases every day.” Emma Dorris UCD
  19. 19. Whose interests does the impact agenda serve?
  20. 20. Mismatch between available research and patients’ preferences.
  21. 21. What The Research Shows
  22. 22. From knowledge gaps…
  23. 23. (iv) Community Value  Expands applicability.  Enhances acceptability & trust.  Increases translation, dissemination of results.  Greater community empowerment.  Builds a more research co- operative spirit within the community.
  24. 24. (v) Experiential Knowledge New perspective and insight Relatability and empathy
  25. 25. Not “just the patient story”
  26. 26. Isabel’s story: a cautionary tale
  27. 27. Q 5 How do you plan to include PPI in your research?
  28. 28. Step 1 Define your purpose and vision.
  29. 29. Medical Research Charities Group www.mrcg.ie
  30. 30. Step 2 Clarify roles and responsibilities
  31. 31. Step 3 Decide level of involvement
  32. 32. PPI In The Research Cycle Identifying Prioritising Design Undertaking Management Analysing Interpreting Disseminating Implementing
  33. 33. PPI In The Research Cycle Identifying Prioritising
  34. 34. You Don’t Know What You Don’t Know
  35. 35. PPI In Action
  36. 36. PPI In The Research Cycle Identifying Prioritising Design
  37. 37. PPI In The Research Cycle Identifying Prioritising Design Undertaking Management
  38. 38. PPI In The Research Cycle Identifying Prioritising Design Undertaking Management Analysing Interpreting
  39. 39. PPI In The Research Cycle Identifying Prioritising Design Undertaking Management Analysing Interpreting Disseminating Implementing
  40. 40. Research Dissemination In A Digital Age
  41. 41. “To him who devotes his life to science, nothing can give more happiness than increasing the number of discoveries, but his cup of joy is full when the results of his studies immediately find practical applications.” - Louis Pasteur
  42. 42. Q 6 Who do you plan to include?
  43. 43. Things To Consider  Are you looking for those who have accessed the health services personally? Or would you consider the role of carers?  How recent do you want their experiences to be?  How important is it that the group is demographically representative?  Are there particular personal qualities or skills you desire?  How will you be more inclusive?
  44. 44. Diversity How will you go beyond the “usual suspects” to encourage people who are seldom heard to take part?
  45. 45. Where will you find PPI partners?  Personal connections.  Support groups, community groups and charities.  Social media networks – Twitter/ Facebook groups/ Facebook ads.
  46. 46. Q 7 What are some key practical considerations?  Where will meetings be held?  Are there accessibility issues?  What is the time commitment expected?  What preparatory work will be required to carry out in advance of meetings (e.g. pre-reading?)  How will you support PPI partners to participate?  Will you need to provide mentoring/training?  What resources do you have to do this?  Are you paying patients?  How will you manage expenses reimbursement?
  47. 47. Patient • Research terminology • Research methods • Research process • Reviewing documents • Managing emotions Researcher • Recruitment • Payment • Good chairing • Communication • Managing emotions
  48. 48. Payment and Reimbursement Things to consider  Should you pay patients?  Does payment create bias?  How much should you pay?  Creates more equal relationships with professionals.  Demonstrates equal recognition of skills.  Shows that people’s contributions are valued and respected.  Recognition of time and cost.  May help recruit a more diverse group of people (not only those who can afford to take time off work).  Reimbursements for out‐of‐pocket expenses should be viewed as an absolute minimum.
  49. 49. Q 8 Which barriers and challenges do we need to overcome to make PPI more meaningful?  Lack of time  Entrenched thinking  Challenges to traditional scientific knowledge  Not wanting to cede control  Power imbalance  Inconsistent approaches  Lip service/tick box
  50. 50. I guess, I'm a bit scared of this idea of handing over some of the power and control to the public so they can influence how research is conducted, because, I feel like the decisions would be quite naive. It may not necessarily be in the best interests of research progress.” “ I spent years training and studying to be a researcher and to really get to grips with the whole research process and these people have been bobbing around taking pills and whatever and claiming incapacity benefit for 5 years and they are coming in and suddenly they are the experts and they have done no studying, no qualifications and that’s not right, their experience cannot outweigh my academic qualifications and knowledge. ”
  51. 51. Q 9 How can we move from tokenism to meaningful engagement?
  52. 52. Tokenism: The practice of making only a perfunctory or symbolic effort to do a particular thing.
  53. 53. PPI PPI is undervalued Leads to token involvement PPI fails to demonstrate value “We will end up with little more than the scientific equivalent of corporate social responsibility: A well‐meaning, professionalized and busy field, propelled along by its own conferences and reports, but never quite impinging on fundamental practices, assumptions and cultures.” Wilsdon J, Wynne B, Stilgoe J. The Public Value of Science: Or how to Ensure That Science Really Matters. London: Demos, 2005.
  54. 54. Meaningful Engagement Facilitators PPI Respect Trust Relationships Sustained
  55. 55. “PPI is a working relationship and it should be treated as such. Reciprocal respect and creating a welcoming and open environment is key. A good working relationship that allows honest dialogue & discussions is paramount for successful.”
  56. 56. Q 10 How should we evaluate PPI?
  57. 57. But… Should we measure PPI?
  58. 58. Ride The PPI Rollercoaster!

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