Outcome Measures in Rheumatology (OMERACT) has shown that long-term involvement of patients in research is beneficial for identifying and validating outcomes that matter to patients. |
Building and sustaining successful partnerships with patients requires restructuring of the research process and investing time and budgets into training and support of patient research partners (PRPs). |
The integration of qualitative and quantitative data, complemented by participation of PRPs, enhances the face validity of outcome research. |
Ensuring representativeness of the patient perspective for diagnosis, disease severity and cultural, social-economic, and geographical diversity is still challenging. |
1 Introduction
2 Outcome Measures in Rheumatology (OMERACT) and the Involvement of Patients
Characteristics | 2002: Gold Coast, QLD, Australia | 2004: Asilomar, CA, USA | 2006: St. Julian’s Bay, Malta | 2008: Kanaskis, AB, Canada | 2010: Borneo, Malaysia | 2012: Pinehurst, NC, USA | 2014: Budapest, Hungary | 2016: Whistler, BC, Canada |
---|---|---|---|---|---|---|---|---|
Sex | ||||||||
Female | 9 | 13 | 12 | 11 | 10 | 15 | 18 | 18 |
Male | 2 | 5 | 8 | 6 | 11 | 5 | 3 | 4 |
Previous attendance | ||||||||
Yes | 0 | 6 | 15 | 8 | 14 | 10 | 16 | 14 |
No | 11 | 12 | 5 | 9 | 7 | 10 | 5 | 8 |
Condition | ||||||||
Rheumatoid arthritis | 11 | 17 | 15 | 7 | 12 | 10 | 10 | 9 |
Osteoarthritis | 1 | 1 | 1 | 1 | 2 | 1 | ||
Psoriatic arthritis | 4 | 2 | 2 | 2 | 2 | 4 | ||
Fibromyalgia | 3 | 1 | ||||||
Gout | 3 | 2 | 2 | |||||
Vasculitis | 1 | 2 | 2 | 2 | 2 | |||
Ankylosing spondylitis | 2 | |||||||
Myositis | 1 | 1 | 1 | |||||
Polymyalgia rheumatica | 1 | 1 | 2 | |||||
Connective tissue diseases | 1 | 1 | 1 | |||||
Behçet’s syndrome | 1 | 1 | ||||||
Chronic pain | 1 | |||||||
Juvenile idiopathic arthritis | 1 | |||||||
Country | ||||||||
USA | 1 | 2 | 3 | 6 | 4 | 7 | 6 | 7 |
UK | 3 | 4 | 3 | 2 | 3 | 4 | 5 | 4 |
Australia | 3 | 2 | 1 | 1 | 3 | 1 | ||
Norway | 2 | 2 | 2 | 1 | ||||
Sweden | 1 | 2 | 3 | 1 | 1 | |||
Denmark | 1 | 1 | ||||||
Canada | 3 | 4 | 5 | 2 | 4 | 4 | 5 | |
The Netherlands | 1 | 2 | 2 | 1 | 4 | 3 | 4 | 4 |
Germany | 1 | |||||||
New Zealand | 1 | 1 | ||||||
France | 1 | 1 | ||||||
Malaysia | 3 | |||||||
Turkey | 1 | |||||||
Italy | 1 | |||||||
Proportion of all attending the conference (%) | 7.9 | 7.0 | 7.4 | 9.0 | 18.1 | 10.2 | 9.5 | 10.0 |
3 Recognizing Patient Research Partners (PRPs) as an Essential Element of all OMERACT Activities
3.1 Endorsement by the Leadership and Full Participation in the OMERACT Process
3.2 Support of PRPs and the Sustainability of Participation
Year | Milestone | PRP support activities |
---|---|---|
2000 | Vote at the final plenary to include the patient perspective at the next OMERACT | Establishment of Patient Stream Coordinator with allocated funding for patient support |
2002 | First patients participating in the conference | Participation in two main sessions only with special patient group workshop Pre-session briefing and post-session debriefing Experienced clinical researcher available for questions, discussion, and general support Nominated clinician available for individual assistance |
2004 | Establishment of Patient Panel with a chair | Production (by PRPs) of OMERACT Glossary |
Post-meeting educational day in Bristol for European patients | ||
Patient newsletter started (by PRPs) | ||
2006 | First policy statement: patient involvement becomes mandatory for module and workshop applications | Patients provided with their own meeting room |
Brief patient introduction session before start of meeting | ||
Patient Panel wrap-up meeting included in program | ||
2008 | PRPs responsible for supporting each other | Substantial patient introduction session before start of meeting Buddy system introduced Pre-conference PRP dinner |
OMERACT Glossary in conference information pack for all attendees | ||
Fatigue included as a recommended outcome in the RA core set | ||
2010 | Second policy statement: integral involvement of patients in all working groups | Daily patient update sessions introduced |
2012 | Evaluation of a decade of patient involvement in OMERACT presented | Pre-conference patient information pack, including lay summaries of all the sessions Introduction of personalized programs PRPs fully involved in development of OMERACT Filter 2.0 |
2014 | Consensus on recommendations for the involvement of patient research partners in OMERACT working groups approved | Daily patient evaluation sessions introduced |
PRP becomes a member of OMERACT Executive | ||
2016 | Preparatory internet seminars for patients |