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

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

Patient Research Partners at the Bristol Academic Rheumatology Unit


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

What’s missing?

What’s missing?

What we will cover

Rheumatology Research Partners in Bristol

OMERACT & the story of fatigue FIRST

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

Working with patients as Research Partners

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

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?

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

How are Bristol Rheumatology patients involved?

Research Participants Patients Advisory Group Patient Teaching Partners Patient Project Partners Patient Research Partners

Patient Research & Project Partners

Karen Robert Pam Enid Marie Margaret Bev Jackie

John Val Val Shelagh Sylvia Sean Greg

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

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

OMERACT and the story of fatigue

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

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

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.

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

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

Patients at OMERACT 6 May 2002

- 9 patients with rheumatoid arthritis- Patient Perspective Workshop

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

Voting at OMERACT 6

Research to include patient perspective in outcome assessment should be carried forward


18 patients with rheumatoid arthritis Australia, Canada, France, Holland, Norway, Sweden,

UK, USA International patient panel formed

Patients and professionals view things

differently…

…this makes a difference to our work!

Patients and professionals view things

differently…

…this makes a difference to our work!

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

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

Voting at OMERACT 7

Fatigue is an important symptom in rheumatoid arthritis


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

Voting at OMERACT 8 Fatigue should be

measured in clinical trials and clinical studies of rheumatoid arthritis whenever possible

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

Challenges for patients and researchers

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

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

Researchers: Challenges of involving patients

Adjusting to altered roles

Avoiding tokenism

Facilitating contribution

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

Altered roles





Altered roles





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

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

Facilitating Contribution

How researchers can help patients to be research partners

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

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

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

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

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?

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

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?

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

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

What have we learned?

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

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


