Creating Patient Centric Preference based Shared Decision-Making Tools

28 June 2026, 1:30 PM – 4:55 PM | 13:30 – 16:55 (local time)

Faculty

  • Divya Mohan, PhD – Senior Scientist and Scientific Office Lead, Patient-Centered Outcomes Team, OPEN Health; Honorary Research Fellow, University of Aberdeen, United Kingdom
  • Marco Boeri, PhD – Director of Preference Research and Global Lead of Patient-Centered Outcomes, OPEN Health; Honorary Professor of Practice in Health Economics, Queen’s University Belfast, United Kingdom

Course Overview

Historically, treatment and care decisions were guided primarily by clinical consensus regarding safety and efficacy. However, the shift toward shared decision-making (SDM) has encouraged active participation from the patient perspective. While clinicians are experts in medical evidence, patients are the “experts by experience” in how disease and treatment affect their lives.

Global guidance from regulators such as the FDA and EMA, as well as HTA bodies including NICE and IQWiG, increasingly emphasizes that patient preferences—the values patients place on different treatment outcomes—should play a role in healthcare decision making. There is also growing emphasis from organizations such as ISPOR and the IMI PREFER consortium on generating patient-centered evidence that is rigorous, transparent, and relevant.

This course explores how patient centric research and preference-informed shared decision-making tools can transform healthcare by fostering meaningful collaboration across stakeholders. The course focuses on two complementary frameworks:

  • ISPOR Guidance for Patient-Centric Research – Best practices for designing and conducting preference studies that prioritize patient engagement and outcomes that matter most to patients
  • IMI PREFER Framework – A structured roadmap for translating patient insights into quantitative tools and decision aids for real-world shared decision-making contexts

Participants will learn how to bridge qualitative discovery research and quantitative methods to develop patient-centered preference studies and decision-making tools aligned with regulatory and HTA expectations.

Learning Objectives

Participants will learn how to:

  • Explore ISPOR guidance on patient engagement and collaboration in preference research and its integration into shared decision-making tools
  • Understand the psychological mechanisms underlying human decision making and the evolving role of shared decision-making in healthcare
  • Review key preference elicitation methodologies (e.g., discrete choice experiments, best-worst scaling), including alignment with ISPOR Good Practices and FDA guidance
  • Understand the value of shared decision-making for patients, healthcare professionals, health systems, and industry
  • Apply a stepwise approach based on the IMI PREFER roadmap, including:
    • Qualitative discovery to identify patient-relevant attributes
    • Patient co-creation to ensure relevance and validity
    • Translation into practical, accessible decision-making tools

Course Format

This half-day course will include a combination of lectures and applied discussion focused on integrating patient-centered research into shared decision-making tools.

Examples from the IMI PREFER initiative will be used to illustrate how preference data can be translated into practical tools for clinical, regulatory, and HTA decision-making contexts.

Participant Requirements

No prior knowledge is required beyond an interest in stated-preference methods.

Participants are requested to download RStudio in advance if they wish to participate in any analytical components of the session.