Exploring Patient Experience Data Dossiers: A Mechanism to Connect Decision-Makers With Patient-Centered Evidence

Speaker(s)

Elisabeth Oehrlein, PhD, MS, Applied Patient Experience, LLC, Washington, DC, USA, Eleanor M Perfetto, PhD, RPh, MS, Pharmaceutical Health Services Research, School of Pharmacy, University of Maryland School of Pharmacy, VENICE, FL, USA, Omar A. Escontrias, DrPH, MPH, National Health Council, Washington, DC, USA and Hayley Chapman, MHS, Patient Focused Medicines Development (PFMD), Oakville, ON, Canada

PURPOSE: Patient experience data (PED) are broadly defined as “data... collected by any persons... to provide information about patients’ experiences with a disease or condition, including the experiences, perspectives, needs, and priorities of patients.” Evidence derived from PED is spread across the peer-reviewed literature, white papers, reports, and patient-group websites. This disorganization makes it challenging for medical product development stakeholders and other healthcare decision-makers to identify PED to inform decision-making. One solution of interest is the concept of disease-specific “PED Dossiers” and a corresponding PED Dossier Directory linking to those PED dossiers. Building on global value dossier frameworks, e.g., the AMCP Format and EUnetHTA Core Model, disease-specific dossiers would be developed by patient groups to communicate PED collated from a variety of sources.

During this interactive session, we will invite members of the HEOR community to discuss the draft PED dossier format and opportunities for dossiers to inform decision-making.

DESCRIPTION: The audience will be invited to participate throughout the discussion via polls, Q/A, and prepared group discussion questions about strategies for driving acceptability/adoption across settings; uses specific to HEOR, including their potential role in implementation of joint scientific consultations in Europe and Medicare drug negotiations in the United States; and stakeholder roles in the generation and use of a Dossier. To begin, Elisabeth Oehrlein will provide an overview of PED Dossiers, including the challenge they are intended to address, a draft template currently being pilot tested, and stakeholder perspectives collected via interviews. Omar Escontrías will present the patient community perspective gathered through a series of workshops with patient groups. Next, Hayley Chapman will discuss strategies for stakeholders to collaborate internationally on PED Dossier implementation. Finally, Eleanor Perfetto will discuss how PED Dossiers align with priorities identified by members of ISPOR’s Patient-Centered Special Interest Group and Patient Roundtable.

Code

125

Topic

Patient-Centered Research