The objective of the Patient Perspective Workshop at OMERACT 6 was to address the question of assessing the outcomes of intervention in rheumatoid arthritis (RA) from the perspective of those who experience the disease themselves. This was done by reviewing the current state of research in the area, identifying the requirements for the development of valid instruments, delineating a research agenda that can attain these requirements, and motivating participants to undertake the appropriate research. Through a series of meetings and discussion sessions a research agenda emerged that includes: exploring subjective experiences of RA identified by patients as important but not encompassed within the current "core set" of outcome measures (such as a sense of well being, fatigue, and disturbed sleep); clarifying terminology; and empowering patients to be more effective partners in outcomes research. These were supported by the OMERACT plenary session. Specific actions were required by both patient participants and organizers to ensure the nature of the conference, its focus and method of working were understood, and that the patient participants were sufficiently confident to make their contribution. [References: 12]
AimThe objective of the Patient Perspective Workshop at OMERACT 6 was to address the question of assessing the outcomes of intervention in rheumatoid arthritis (RA) from the perspective of those who experience the disease themselves.
The overall aim, therefore, was to develop valid outcome instruments that incorporate the perspective of the patient and to prepare the evidence and arguments for their inclusion in the core set of outcome measures in RA. The objectives of the workshop were to review the current state of research in the area, identify the requirements for the development of valid instruments, delineate a research agenda that can attain these requirements, and motivate participants to undertake the appropriate research.
Kirwan, John Heiberg, Turid Hewlett, Sarah Hughes, Rod Kvien, Tore Ahlmen, Monica Boers, Maarten Minnock, Patricia Saag, Kenneth Shea, Beverley Suarez Almazor, Maria Taal, Erik
Disease Category: Rheumatology
Disease Name: Rheumatoid arthritis
Age Range: Unknown
Sex: Either
Nature of Intervention: Not specified
- Conference participants
- Consumers (patients)
- Patient perspectives
- COS for clinical trials or clinical research
- Semi structured discussion
Patient Perspective Workshop participants included 11 patients from 7 countries, 5 organizing group members, and 41 other participants from those attending the OMERACT 6 meeting. The workshop consisted of 3 formal sessions each of 2 hours, working group meetings between and after the formal sessions, and an unscheduled meeting of the patient participants.
In preparation for the workshop discussion groups, members were first reminded of the genesis of the workshop . A patient participant summarized her own experience of the effects of RA and how she evaluated the state of her disease. Evidence that patients and clinicians hold differing views of the importance of various outcome assessments was presented, and the main questions to be addressed by the workshop discussion groups were introduced. Each question was addressed by 2 groups, which consisted of a chair, a rapporteur, 2 patient participants, and up to 6 other participants. At the feedback session for all participants, each question was addressed in turn, first hearing the comments from the 2 groups, then turning to a general discussion. At the end there was an opportunity for participants to raise any other matters. Points to emerge from the discussions and feedback session were recorded on flip charts or overhead projectors, and taken forward to the post-workshop meeting (the “postamble”).
Organizers, patient participants, discussion group chairs, rapporteurs, and others with a specific research interest in this area gathered the following day to draw together all the issues that emerged at the workshop and to organize them into a coherent presentation for the final OMERACT plenary session. Considering the need to develop valid instruments, the Patient Perspective Workshop agreed on the need to apply the OMERACT Filter8, but felt that outcomes identified by patients but currently outside the filter required development. In some areas there is a need to “listen and interpret” before making assumptions about patient views on outcomes.
In common with other OMERACT 6 workshops and modules, a list of proposals was presented to the final plenary session for brief debate and voting. The workshop was careful to offer proposals that OMERACT members themselves could implement, so that endorsement would help to drive forward action in this area of outcomes research. By large majorities (80–95%) the OMERACT participants as a whole agreed:
•research to include the patient perspective in outcome assessment should be carried forward
•patients themselves should increase and facilitate patient involvement in research
•patient participation is an integral part of OMERACT activities
•an OMERACT patient advisory group should be established