Are We Patient-Centered Yet? Patient Engagement and Patient-Centered Research in HEOR

Including patients as partners to ensure research meets the needs of the population being studied is now strongly encouraged by regulatory agencies and funding bodies. Sponsors and researchers often describe their research as patient centered, but it is not clear how or if patients were actually engaged. The ISPOR Patient-Centered Special Interest Group (PC SIG) invites all stakeholders (e.g., patient centered, oncology, COA, health preference, and HEOR) from the ISPOR community to learn about opportunities for patient engagement across stages of study development and in various study types.

In this session, speakers will define patient centricity and engagement; offer strategies for engagement for a range of HEOR study types and contexts; and identify practical and scientific challenges to engagement as well as possible solutions. We will discuss key considerations including engagement when resources may be limited, representative engagement and working with underrepresented groups.

Dr Roydhouse will provide an overview of the topic and the PC SIG’s previous and current work regarding patient engagement. Dr Escontrias will discuss patient engagement and the engagement of underrepresented groups from a patient advocate perspective. He will also describe the numerous resources the National Health Council has developed over the past several years on meaningful patient engagement. Dr Carlton will discuss patient engagement in patient-reported outcome measure development and value/HTA studies (10m).

Polling will be used to capture audience experiences with patient centricity/engagement. Twenty minutes will be reserved for moderated audience discussion, including a Q&A session.

As the PC SIG has developed a definition of engagement in research and is gathering data on the ISPOR community’s use of patient engagement strategies, this session is timely and can inform future SIG work, including contributing to a potential future publication.