Vass CM, de Bekker-Grob E, Shields G, Abraham L. Who is the ‘patient' in patient preference studies? Current practice and future challenges. Presented at the Virtual ISPOR Europe 2020 Conference; November 9, 2020.

ISSUE: Healthcare decision makers are increasingly interested in incorporating patient preference information into their research and policy-related activities. However, many guidelines and working documents often neglect to define what a ‘patient’ is, despite the desire to elicit data from them. The panel will debate the role of preference data specifically from patients and discuss circumstances when preferences from alternative stakeholders could be acceptable. The panel offers academic, industry, and methodological perspectives. Esther de Bekker-Grob will introduce and moderate the panel. Caroline Vass will outline the need for a broad definition of the ‘patient’, drawing on her experience of eliciting preferences for screening and diagnostic tests. Lucy Abraham will provide an industry perspective, illustrating how Pfizer used patient preferences for chronic pain treatments. Gemma Shields will critically summarize how the public’s preferences are currently incorporated within the quality-adjusted life-year (QALY) framework of health technology assessments (HTA). Each panelist will speak for 12-15 minutes on the opportunities and challenges associated with eliciting patients’ and, when relevant, other stakeholders’ preferences for HTA and regulatory decisions. A 15-minute question-and-answer session will follow.

OVERVIEW: Patient preference data are increasingly being used to inform healthcare decisions. Although most documentation by regulators advocates the use of preference data from patients, there exist few definitions of what constitutes a ‘patient’. For some technologies, such as cancer screening or genetic testing, individuals without the condition may become a patient after consumption. In other instances, the patient may not be able to reliably state their preferences, such as young children or those with significant cognitive impairments. For many decisions, even individuals with the disease may not have consumed the technology unless they were in the treatment arm of a trial. Should clinical and economic decision makers consider patient preference data exclusively or should the views of other stakeholders be considered?

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