Hauber B, Leunikava I, Smith J, Villani F. Capturing patient perspectives by implementing discrete-choice experiments in real-world studies: opportunities and challenges. Presentation to be given at the Virtual ISPOR Europe 2020; November 2020.


ISSUE: Clinical and observational studies often neglect to address the patient’s voice regarding their condition's management, even though regulatory authorities and payers express a desire for this perspective to be integrated into research and development activities. The panel, which reflects the diversity of perspectives on the topic, will debate benefits and limitations of integrating patient preferences in real-world studies, and how the information obtained could be used by different stakeholders. Brett Hauber will introduce and moderate the panel, providing a critical perspective. Jasmine Smith will outline the need for a greater role for the patient voice and her experience participating in real-word evidence collection. Iryna Leunikava will provide an industry perspective, illustrating how a recent real-world observational study systematically capturing the patient voice in epilepsy was executed and will summarize and discuss the challenges that emerged, and Prof. Villani will discuss his experience as an investigator in the same study. Each panelist will speak for 12-15 minutes on the opportunities and challenges associated with incorporating the patient voice into clinical and observational studies. A 15-minute question-and-answer session will follow.

OVERVIEW: The patient voice is rarely captured in prospective, real-world studies. A longitudinal discrete choice experiment was employed to measure patient preferences regarding disease management in a prospective, observational study that will analyze efficacy and safety outcomes of different antiepileptic drugs. However, this also raises questions as to the appropriateness of measuring preferences in observational studies and practical considerations regarding choice of a preference method and implementation of preference elicitation (both cross-sectionally and longitudinally) and issues as to the role of patients in study design and the impact of patient preferences on treatment, policy, and reimbursement decisions. Ultimately, the issue is whether and how patient preferences elicited in prospective trials can provide evidence that is useful to clinical, policy, and economic decision-makers.

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