There is a growing consensus across stakeholder groups of the importance of patient engagement (PE) in medicines development, and during the life cycle of a product (“medicines life cycle”). There are an increasing number of efforts to achieve this. PE in the research and development setting especially has received much focus with the development of frameworks or guidance. There are also guidance or frameworks at other milestones such as in health technology appraisal, benefit-risk assessment and in value determination. The issue of definition and terminology of PE and patient centricity has also highlighted the need for a common understanding to facilitate multistakeholder team-work. Crucially, there is a need for a practical PE model that can be assessed to demonstrate the value of PE, in terms that each stakeholder group recognizes, to encourage acceptance and implementation.
This report describes the findings of a qualitative survey-based study of stakeholder expectation.