pp306 patient research partners at the bristol academic rheumatology unit.ppt jla/amrc 17 september...
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Pp306 Patient Research Partners at the Bristol Academic Rheumatology Unit.pptJLA/AMRC 17 September 2007
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Patient Research Partners at the Bristol Academic Rheumatology Unit
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Patient Research Partners at the Bristol Academic Rheumatology Unit
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Who are we?
Bristol Academic Rheumatology Unit
U B H T TEACHING CARE
Pam RichardsPatient Research Partner
PRP Coordinator
John Kirwan
Professor of Rheumatic Diseases
University of Bristol
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What’s missing?
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What’s missing?
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What we will cover
Rheumatology Research Partners in Bristol
OMERACT & the story of fatigue FIRST
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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
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Working with patients as Research Partners
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Working with patients as Research Partners
Collaboration between patients Collaboration between patients and professionals in researchand professionals in research
Using personal experience as a resource
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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?
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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
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How are Bristol Rheumatology patients involved?
Research Participants Patients Advisory Group Patient Teaching Partners Patient Project Partners Patient Research Partners
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Patient Research & Project Partners
Karen Robert Pam Enid Marie Margaret Bev Jackie
John Val Val Shelagh Sylvia Sean Greg
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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 PhysioMeasuring Fatigue Multicentre DA Trial New Patient Nurse Clinics
NICE/RCP Nurses perceptions of
RheumatologyOMERACT 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
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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
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OMERACT and the story of fatigue
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OMERACT
Outcome Measures in Rheumatology Clinical Trials
Working conference of clinicians and methodologists
Formed 14 years agoMeets 2-yearlySeeks to identify outcomes,
instruments and methods of assessing benefit in rheumatology
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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
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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.
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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
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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
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Patients at OMERACT 6 May 2002
- 9 patients with rheumatoid arthritis- Patient Perspective Workshop
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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
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Voting at OMERACT 6
Research to include patient perspective in outcome assessment should be carried forward
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Patients at OMERACT 7 May 2004
18 patients with rheumatoid arthritis Australia, Canada, France, Holland, Norway, Sweden,
UK, USA International patient panel formed
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Patients and professionals view things
differently…
…this makes a difference to our work!
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Patients and professionals view things
differently…
…this makes a difference to our work!
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Importance of outcomes reported by women with established rheumatoid arthritisPatricia Minnock, Barry Bresnihan; Dublin (in preparation) Patricia Minnock, Barry Bresnihan; Dublin (in preparation)
Rel
ativ
e sc
ore
2001
2003
Patients and professionals view the outcome of rheumatoid arthritis differently
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Importance of outcomes reported by women with established rheumatoid arthritisPatricia Minnock, Barry Bresnihan; Dublin (in preparation) Patricia Minnock, Barry Bresnihan; Dublin (in preparation)
Rel
ativ
e sc
ore
2001
2003
Patients and professionals view the outcome of rheumatoid arthritis differently
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Voting at OMERACT 7
Fatigue is an important symptom in rheumatoid arthritis
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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
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Voting at OMERACT 8 Fatigue should be
measured in clinical trials and clinical studies of rheumatoid arthritis whenever possible
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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
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Challenges for patients and researchers
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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
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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
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Researchers: Challenges of involving patients
Adjusting to altered roles
Avoiding tokenism
Facilitating contribution
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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
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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
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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
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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
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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
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Facilitating Contribution
How researchers can help patients to be research partners
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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
FIRST
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
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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
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Identify: Projects, patients,
Projects: Clinical / outcome / service deliveryPatients: 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
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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
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Respect: Contribution, Views
Respect Contribution and Views Each team member brings their expertisePatients have unwittingly gained expertise of their conditionConsequently 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?
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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
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Support: Communication, working
Protocol, glossary. (www.invo.org.uk) One-to-one meeting initially with PI Researcher contact point Web access: email, info, papers (Athens) Hon Contract = legitimacy, value, access Partner desk with computer/stationery? Partner Network with facilitator?
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Training II : Novices
Why do researchers need Research Partners? The value of the patient’s perspective
How and when can patients be involved? Can we believe what we think we know?
Evidence Different projects need different methods
Research methods: Randomized Control trial, Observation What do you want to measure and how?
Measuring Outcomes, Statistics – chance, association What does getting informed consent mean?
Public protection: Ethics, Research Governance Keeping up standards, being accountable
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Training II : Experienced
Role of Patient Research Partners Using the net to find information (practical) Designing a research project Quantitative, Qualitative research Proof of Principle studies Implementing a research project Analysing and Interpreting the results Feedback: experiences and concerns
Groups better than individual Modular training easier for Research Partners
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What have we learned?
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Benefits of patient research collaboration
Research related to priorities & clinical need Appropriate outcomes, relevant to patients Projects include patient perspective and interpretation Better recruitment and dissemination Better use of resources (relevant issues)
The patients’ experience is a valuable resource which should be utilised
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Summary
Patient Research Partners can contribute in a variety of ways
Take the FIRST step – make specific provision for patient inclusion
Support you patient research partners as a group and as individuals
Patient Partner Activities
Advice and support 8
Grant applicant 9
Contributions to protocol 23
Analysed results 9
Interpretation of results 13
Co-Author papers 5
Presentation of results 5
Training II : Novices
Why do researchers need Research Partners? The value of the patient’s perspective
How and when can patients be involved? Can we believe what we think we know?
Evidence Different projects need different methods
Research methods: Randomized Control trial, Observation What do you want to measure and how?
Measuring Outcomes, Statistics – chance, association What does getting informed consent mean?
Public protection: Ethics, Research Governance Keeping up standards, being accountable
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Patient Research Partners at the Bristol Academic Rheumatology Unit
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Patient Research Partners at the Bristol Academic Rheumatology Unit
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Patient Research Partners at the Bristol Academic Rheumatology Unit