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

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Pp306 Patient Research Partners at the Bristol Academic Rheumatology Unit.ppt JLA/AMRC 17 September 2007 Slide 2 Patient Research Partners at the Bristol Academic Rheumatology Unit Slide 3 Slide 4 Who are we? Bristol Academic Rheumatology Unit Pam Richards Patient Research Partner PRP Coordinator John Kirwan Professor of Rheumatic Diseases University of Bristol Slide 5 Whats missing? Slide 6 Slide 7 What we will cover Rheumatology Research Partners in Bristol OMERACT & the story of fatigue FIRST Slide 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 Slide 9 Working with patients as Research Partners Slide 10 Collaboration between patients and professionals in research Using personal experience as a resource Slide 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? Slide 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 Slide 13 How are Bristol Rheumatology patients involved? Research Participants Patients Advisory Group Patient Teaching Partners Patient Project Partners Patient Research Partners Slide 14 Patient Research & Project Partners Karen Robert Pam Enid Marie Margaret Bev Jackie John Val Shelagh Sylvia Sean Greg Slide 15 Bristol projects involving Patient Research Partners 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 Slide 16 Patient Research Partner Activities Advice and support 8 Grant co-applicant 9 Contributions to protocol23 Analysed results 9 Interpretation of results13 Co-Author papers 5 Presentation of results 5 OMERACT Patient Panel 3 Slide 17 OMERACT and the story of fatigue Slide 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 Slide 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 Slide 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. Slide 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 Slide 22 Voting at OMERACT 5 Research to include the patient perspective should be carried forward We will increase patient involvement in research Patient participation should be an integral part of OMERACT activities Slide 23 Patients at OMERACT 6 May 2002 - 9 patients with rheumatoid arthritis - Patient Perspective Workshop Slide 24 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 Patients at OMERACT 6 Slide 25 Voting at OMERACT 6 Research to include patient perspective in outcome assessment should be carried forward Slide 26 Patients at OMERACT 7 May 2004 18 patients with rheumatoid arthritis Australia, Canada, France, Holland, Norway, Sweden, UK, USA International patient panel formed Slide 27 Patients and professionals view things differently this makes a difference to our work! Slide 28 Patients and professionals view things differently this makes a difference to our work! Slide 29 Patricia Minnock, Barry Bresnihan; Dublin (in preparation) Importance of outcomes reported by women with established rheumatoid arthritis Patricia Minnock, Barry Bresnihan; Dublin (in preparation) Patients and professionals view the outcome of rheumatoid arthritis differently Slide 30 Patricia Minnock, Barry Bresnihan; Dublin (in preparation) Importance of outcomes reported by women with established rheumatoid arthritis Patricia Minnock, Barry Bresnihan; Dublin (in preparation) Patients and professionals view the outcome of rheumatoid arthritis differently Slide 31 Voting at OMERACT 7 Fatigue is an important symptom in rheumatoid arthritis Slide 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 Slide 33 Voting at OMERACT 8 Fatigue should be measured in clinical trials and clinical studies of rheumatoid arthritis whenever possible Slide 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 Slide 35 Challenges for patients and researchers Slide 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 Slide 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 Slide 38 Researchers: Challenges of involving patients Adjusting to altered roles Avoiding tokenism Facilitating contribution Slide 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 Slide 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 Slide 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 Slide 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 Dont use patients out of a sense of political correctness Slide 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 Dont use patients out of a sense of political correctness Slide 44 Facilitating Contribution How researchers can help patients to be research partners Slide 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 FIRSTFIRST 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 Slide 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 Slide 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 Slide 48 Ident