Successful Stepwise Development of Patient Research Partnership: 14 Years’ Experience of Actions and Consequences in Outcome Measures in Rheumatology (OMERACT)

Abstract

There is increasing interest in making patient participation an integral component of medical research. However, practical guidance on optimizing this engagement in healthcare is scarce. Since 2002, patient involvement has been one of the key features of the Outcome Measures in Rheumatology (OMERACT) international consensus effort. Based on a review of cumulative data from qualitative studies and internal surveys among OMERACT participants, we explored the potential benefits and challenges of involving patient research partners in conferences and working group activities. We supplemented our review with personal experiences and reflections regarding patient participation in the OMERACT process. We found that between 2002 and 2016, 67 patients have attended OMERACT conferences, of whom 28 had sustained involvement; many other patients contributed to OMERACT working groups. Their participation provided face validity to the OMERACT process and expanded the research agenda. Essential facilitators have been the financial commitment to guarantee sustainable involvement of patients at these conferences, procedures for recruitment, selection and support, and dedicated time allocated in the program for patient issues. Current challenges include the representativeness of the patient panel, risk of pseudo-professionalization, and disparity in patients’ and researchers’ perception of involvement. In conclusion, OMERACT has embedded long-term patient involvement in the consensus-building process on the measurement of core health outcomes. This integrative process continues to evolve iteratively. We believe that the practical points raised here can improve participatory research implementation.

Engaging Stakeholders and Promoting Uptake of OMERACT Core Outcome Instrument Sets

“…A rapporteur from each breakout group presented key findings back to the entire group. OMERACT has an extensive history of engaging with patient research partners (people living with a disease or condition who actively and equally contribute to research projects) to ensure that the patient perspective is captured when identifying important outcome domains (15)(16)(17)(18)(19)(20). peer-reviewed publications and presentations at professional meetings, were suggested by participants.…”

Development and formative evaluation of patient research partner involvement in a multi-disciplinary European translational research project

“…The involvement of patients in decisions that ultimately affect them has been accepted as beneficial to health research in a number of ways [4]. PPI enhances research quality, efficiency, and transparency, and helps ensure that public benefit is the key focus of the work undertaken.…”

The importance of measuring the impact of patient-oriented research

“…1 Some of the articles that alluded to a positive impact were actually about specific benefits to the patient who is engaged in the research, such as giving them a sense of empowerment, ownership and fulfillment. 14,15,20 Even then, it was often the case that authors' claims were backed not by comprehensive research, but rather by anecdotal evidence, brief conversations or solitary case studies. [21][22][23] According to Fergusson and colleagues, 17 the answers to basic questions about the value of patient-oriented research remain unanswered.…”