OBJECTIVES: Value frameworks are frequently criticized for not being sufficiently patient-centered. At the same time, the Patient-Centered Outcomes Research Institute and other organizations have created guidelines to enhance the patient-centricity of these value assessments. In this study, we assessed the extent to which the Innovation and Value Initiative (IVI) adhered to established guidance on engaging patients in developing their value model in rheumatoid arthritis (the IVI-RA model).

METHODS: We conducted a targeted review and synthesis of peer-reviewed and grey literature to identify best practices in patient engagement when conducting health economic research. Next, we conducted a self-assessment of how the process for creating the open-source IVI-RA model coincided with 4 patient-centered value rubrics outlined by the National Health Council, National Pharmaceutical Council, PhRMA, and FasterCures. IVI also received feedback on its degree of patient-centricity from a multi-stakeholder Working Group for Patient Engagement, which included patients, as well as providers, patient advocates, payers and life sciences perspectives.

RESULTS: Mapping of IVI’s activities against the patient-centered value rubric guidelines identified both areas of strength and areas for development. Areas of strength included: methodological rigor; incorporation of high-quality evidence in research and initiatives; and open and transparent methods and processes. Areas for development included: broader and more systematic identification and inclusion of patients/patient advocacy groups in the design, execution, and dissemination of IVI research; and ensuring that work is meaningful to and for diverse groups of patients. Based on these findings, IVI researchers produced a list of principles, commitments, and formal evaluation processes for partnering with patients as part of future research initiatives (https://bit.ly/2l60MfO).

CONCLUSIONS: IVI’s efforts to create a patient-centric model in rheumatoid arthritis scored well on a number of dimensions, but earlier patient partnership following explicit processes (including formal evaluation and reporting) is needed to improve future IVI open-source value models.