Background/Purpose:

Patient experiences with rheumatoid arthritis (RA) symptoms, treatments, and rheumatology care are critically important for the assessment of treatment-effectiveness and quality of care for RA. Despite recommendations for more patient-centered research, measures to evaluate the effectiveness of RA therapies often fail to reflect patient priorities.^[1]The Ontario Best Practices Research Initiative (OBRI) is a clinical registry focused on improving the quality of care and health outcomes of patients with RA through long-term data collection on therapies, clinical practices, and health-care utilization. In OBRI, patient self-reported data is collected using structured interviews and validated questionnaires. The objectives of this study were to explore patient priorities in RA research, identify gaps in OBRI data collection, and explore options for improved data collection and communication with patients.

Methods:

RA patients enrolled in the OBRI clinical registry were invited to participate in 1 of 3 patient sessions in 2014 to provide feedback on how OBRI data collection could be improved to better capture patient needs/priorities. In small groups facilitated by a moderator, patients were asked to identify gaps in OBRI data collection, share experiences with RA and rheumatology care, and discuss priorities for RA research. In total, 48 RA patients participated in a facilitated discussion. After each session, patients completed a questionnaire on their use of social media.

Results:

Four overarching research priorities were identified: 1) A need for qualitative research focused on patient experiences with RA including: journeys to diagnosis, symptoms, treatment side effects, and challenges/concerns; 2) A need for qualitative research into patient satisfaction with rheumatology care including: rheumatologist accessibility, communication, and disease management; 3) A need for OBRI research questions addressing patient social support networks, strategies for coping with flares, diet and exercise, and the use of alternative therapies; and 4) A need for more information from rheumatologists on medication risks and side effects. Of those who completed the social media questionnaire, 100% reported regular use of email and 81% reported regular use of social networking sites, however only 54% reported a preference for research-related communication through email compared with regular postage.

Conclusion:

RA patients expressed that some of their most important disease-related experiences are not captured by structured questionnaires, suggesting a need for mixed-methods research to capture both qualitative and quantitative patient-reported outcomes. This study identifies patient research priorities and opportunities for improved care and communication.