Patient Research Partners at the Bristol Academic Rheumatology Unit

1. Pp306 Patient Research Partners at the Bristol Academic Rheumatology Unit.pptJLA/AMRC 17 September 2007

2. Patient Research Partners at the Bristol Academic Rheumatology Unit

3. Patient Research Partners at the Bristol Academic Rheumatology Unit

4. John Kirwan Professor of Rheumatic Diseases University of Bristol Pam Richards Patient Research Partner PRP Coordinator Bristol Academic Rheumatology Unit Who are we?

5. What’s missing? Instructions for including patients in research

6. What’s missing? Instructions for including patients in research u r !

7. What we will cover • Rheumatology Research Partners in Bristol • OMERACT & the story of fatigue • FIRST

8. What we hope you will learn • It is practical to include patients as full partners in the research process • This takes time and effort… • …but there are some simple principles to follow

9. Working with patients as Research Partners

10. Working with patients as Research Partners Collaboration between patients and professionals in research Using personal experience as a resource

11. Patient Involvement in Research Patients can be actively involved: • Prioritizing research • Member of grant funding board • Review grant applications • Relevance of the research question • Significance for patients - will it be beneficial? • Is it a good use of resources?

12. Patient Involvement in Research Patients can be actively involved: • Help manage research • Member of research steering committee • Has something obvious been missed from the protocol? • One-off advisory role e.g. scientific studies • Help to implement the findings - service delivery • Advocate for best practice; evidence based treatment

13. How are Bristol Rheumatology patients involved? • Research Participants • Patients Advisory Group • Patient Teaching Partners • Patient Project Partners • Patient Research Partners

14. Karen Robert Pam Enid Marie Margaret Bev Jackie John Val Val Shelagh Sylvia Sean Greg Patient Research & Project Partners

15. AHP Education in Rheumatology Anti-TNF Injector Project ARC Project on aids and appliances DA PsA/AS Roll out Definition of wellbeing Direct Access Roll Out Effective Healthcare Consumers Fatigue qualitative study Fatigue self-management module Knee OA and Physio Measuring Fatigue Multicentre DA Trial New Patient Nurse Clinics NICE/RCP Nurses perceptions of Rheumatology OMERACT Patient Group Overnight IL-6 & Prednisone Overnight SF IL-6 Patient outcomes study PI HAQ Study 1 PI HAQ Study 2 - Sensitivity Prompts for change RASE and patient education Sleep study in RA Steps pilot project Bristol projects involving Patient Research Partners

16. Patient Research Partner Activities Advice and support 8 Grant co-applicant 9 Contributions to protocol 23 Analysed results 9 Interpretation of results 13 Co-Author papers 5 Presentation of results 5 OMERACT Patient Panel 3

17. OMERACT and the story of fatigue

18. OMERACT • Outcome Measures in Rheumatology Clinical Trials • Working conference of clinicians and methodologists • Formed 14 years ago • Meets 2-yearly • Seeks to identify outcomes, instruments and methods of assessing benefit in rheumatology

19. OMERACT • Standardised a ‘core set’ of outcome measures for rheumatoid arthritis clinical trials • The core set has be adopted by the regulatory agencies in USA and Europe

20. OMERACT ‘Core set’ for rheumatoid arthritis • Pain • Physical Function • Swollen Joint Count • Tender Joint Count • Patient Global Assessment • Physician Global Assessment • Acute Phase Reactants (CRP, PV, ESR) • Imaging (in trials of 1 yr or more) Tugwell P, Boers M. Developing concesus on preliminary core efficacy endpoints for rheumatoid arthritis clinical trials. J Rheumatol 1993; 20: 555-556.

21. OMERACT 5, May 2000 • Tried to define ‘minimum clinically important difference’ for changes in ‘core set’ outcomes • Realised this depends on who defines ‘important’! • Resolved to include patients as participants in future work on defining the outcomes of arthritis

22. Voting at OMERACT 5 Agreed! • Research to include the patient perspective should be carried forward Agreed! • We will increase patient involvement in research • Patient participation should be an integral part of OMERACT activities Agreed!

23. Patients at OMERACT 6 • May 2002 • 9 patients with rheumatoid arthritis • Patient Perspective Workshop

24. Patients at OMERACT 6 • Patients became involved in and contributed to all sessions • It became clear that some outcomes of importance to patients had not been considered by researchers

25. Voting at OMERACT 6 • Research to include patient perspective in outcome assessment should be carried forward Agreed!

26. Patients at OMERACT 7 • May 2004 • 18 patients with rheumatoid arthritis • Australia, Canada, France, Holland, Norway, Sweden, UK, USA • International patient panel formed

27. Patients and professionals view things differently… …this makes a difference to our work!

28. Patients and professionals view things differently… …this makes a difference to our work!

29. Importance of outcomes reported by women with established rheumatoid arthritisPatricia Minnock, Barry Bresnihan; Dublin (in preparation) Patients and professionals view the outcome of rheumatoid arthritis differently

30. Importance of outcomes reported by women with established rheumatoid arthritisPatricia Minnock, Barry Bresnihan; Dublin (in preparation) Patients and professionals view the outcome of rheumatoid arthritis differently

31. Voting at OMERACT 7 • Fatigue is an important symptom in rheumatoid arthritis Agreed!

32. Patients at OMERACT 8 • May 2006 • 21 Patients with rheumatoid arthritis or psoriatic arthritis • Australia, Canada, Denmark, France, Germany, Holland, Norway, Sweden, UK, USA • Inclusion of patient views in all future international agreements

33. Hooray! Voting at OMERACT 8 • Fatigue should be measured in clinical trials and clinical studies of rheumatoid arthritis whenever possible Agreed!

34. Patients at OMERACT Professionals and Patient Research Partners bring different skills, values and experiences Patients’ experience-based knowledge is a resource to be utilised, not wasted

35. Challenges for patients and researchers

36. Summary:Role of Patient Research Partner • Help target resources towards issues of importance to patients • Point out what appears to have been missed • Bridge the gap between learned knowledge and experiential knowledge

37. Challenges for patients: Overcoming the first hurdles • Doubts about ability to contribute • Doubts about value of contribution • Personal knowledge of long-term condition complements learned knowledge of professionals • Concern over lack of technical knowledge • Concern over lack of clarity of role • Not wanting to appear foolish • Hearing difficult facts about condition • Learning curve - Challenging

38. Researchers: Challenges of involving patients • Adjusting to altered roles • Avoiding tokenism • Facilitating contribution

39. Altered roles Establish Boundaries to avoid conflict of roles • Patient and Clinician, or Colleagues? • Establish boundary between patient v partner role • Solution • Compartmentalize different roles: • Clinic: patient and clinician • Meeting etc: partner and colleague • This is difficult for both patient and clinician • Important to discuss all issues openly

40. Altered roles Establish Boundaries to avoid conflict of roles • Patient and Clinician, or Colleagues? • Establish boundary between patient v partner role • Solution • Compartmentalize different roles: • Clinic: patient and clinician • Meeting etc: partner and colleague • This is difficult for both patient and clinician • Important to discuss all issues openly

41. Altered roles Establish Boundaries to avoid conflict of roles • Patient and Clinician, or Colleagues? • Establish boundary between patient v partner role • Solution • Compartmentalize different roles: • Clinic: patient and clinician • Meeting etc: partner and colleague • This is difficult for both patient and clinician • Important to discuss all issues openly

42. Avoid tokenism • Simply there to satisfy funding body • Assumptions: Knowledge, Ability, Impairment • Not giving equal consideration of views • Patients should not be expected to endorse a project at the end if they have not had input throughout • Don’t use patients out of a sense of political correctness

43. Avoid tokenism • Simply there to satisfy funding body • Assumptions: Knowledge, Ability, Impairment • Not giving equal consideration of views • Patients should not be expected to endorse a project at the end if they have not had input throughout • Don’t use patients out of a sense of political correctness

44. Facilitating Contribution FIRST How researchers can help patients to be research partners

45. Practicalities of involving patients - FIRST steps • Facilitate - early inclusion, enable contribution • Identify - projects, patients, roles • Respect - views, abilities, confidentiality • Support - communication, working • Train - e.g. research methods, ethics, evidence F I R S T Patients & Professionals as research partners: Benefits, challenges, practicalities. S Hewlett, M De Witt, P Richards, E Quest, R Hughes, T Heiberg, J Kirwan. Arthritis & Rheumatism (Arthritis Care & Research) 2006; 55: 676-680

46. Facilitate: Contribution, inclusion • Involve before protocol finalized • Meetings – access; timing; comfort • Expenses – travel; postage; cartridges • Ask their opinions; encourage; explain; • Consider equally for tasks - as any other • Apply criteria - co-applicant; co-author • Principal Investigator has key responsibility to facilitate

47. Identify: Projects, patients, Projects: Clinical / outcome / service delivery Patients: Experience of disease / issue Able to review / discuss information / unbiased Questioning, confident, interested, have time to commit, can step out of patient role Selected for personal experience (From your clinical practice)? Own views, new perspective Selected to represent a society (Advocates) ? Official views - official agenda? May be crucial for policy decisions

48. Identify: Roles Review draft protocols Member of Steering Group Review outcome selection, questionnaires Study design, patient selection Analyse and interpret data Attend conferences Present results Co-author

49. Respect: Contribution, Views • Respect Contribution and Views • Each team member brings their expertise • Patients have unwittingly gained expertise of their condition • Consequently patients bring a perspective which is not available to most researchers • Treat as any other member of the team: • Use other experiences (e.g teacher) • Develop abilities (attend courses?) • Value contribution - by paying?

50. Respect: Confidentiality • Information shared by the patient of their own experience should remain confidential • Patients also need to respect and keep confidential anything they may hear • Trust ‘Confidentiality Agreement’ should be considered