Rules of Engagement in Drug Development

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International Society for Pharmacoeconomics and Outcomes Research (ISPOR)
18th Annual International Meeting
Patient-Centered Outcomes: Focusing on the Patient


The first rule of patient engagement is that patients come first! Even though patient engagement currently occurs across a wide range of venues through a wide range of mechanisms, this rule may not always be considered. Appropriate types of engagement need to be implemented at critical times in the drug development process in order to generate meaningful, useful information from the patient perspective. The purpose of this issue panel is to present the patient view on how to get patient engagement right. The goal of this panel is to identify principles for meaningful patient engagement during medical product development.

This issue panel will open with a discussion on defining “patient engagement” with a framework for thinking about patient engagement activities during the product lifecycle. An example will be provided outlining key opportunities for patient engagement and criteria for assessing the quality of that engagement throughout the lifecycle of a product. Examples of patient engagement already utilized by the pharmaceutical industry include interviews, focus groups, surveys, and longitudinal studies using diaries or web-based technology. Rules of engagement will be addressed by both an individual patient and a patient advocacy-group representative. Their views will be used to introduce “rules of engagement” for activating the patient voice in drug development research.

Moderator: Eleanor M. Perfetto, PhD, MS, Senior Director, Reimbursement & Regulatory Affairs, Federal Government Relations, Pfizer, Inc., Washington, DC, USA

Panelists: Cynthia Bens, BA, Vice President of Public Policy, Alliance for Aging Research, Washington, DC, USA; Myriam Marquez, BA, JD, National Early-Stage Advisor, Alzheimer’s Association, Seattle, WA, USA

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