Understanding patient and physician perspectives regarding innovative research in rheumatoid arthritis

The optimal treatment choice for an individual with rheumatoid arthritis (RA) is yet unknown. While novel approaches such as pragmatic randomized clinical trials (pRCT) and biomarker-driven trials are needed to advance personalized RA care, end user views of these approaches have not been extensively studied. This study aimed to gain insight into patients' and physicians' perspectives to enhance the success of future RA research innovations. As part of a larger pRCT, we conducted three focus groups with 17 patients with RA and one focus group with five rheumatologists from two major university hospitals. The discussions, which revolved around the challenges of innovative research, were verbatim transcribed and thematically analyzed adopting a self-management framework aligned with a patient engagement perspective. Patients' discussions revolved around three themes: (a) patients' preferences for information related to medical management decision-making; (b) necessary behavior change due to treatment-related challenges; and (c) patient-physician relationship as a foundation for constructively approaching shared decision-making. As for physicians, their discussion was organized into three themes: (a) the impact of research on medical management of a patient; (b) feasibility of pRCT and biomarker-driven trials; and (c) how randomization could challenge shared decision-making with patients. Patients and physicians shared their concerns regarding how being part of research in the setting of clinical care could disrupt day-to-day activities and threaten shared decision-making. Understanding patients' and physicians' perspectives regarding pRCT and biomarker-driven trials is key to enhance the success of these research innovations.