Launching the PREFER Recommendations

On April 28, the PREFER project launched a set of recommendations for how and when it is best to perform and include patient preferences in decision making during the medical product life cycle. The recommendations is the result of public and private partners working together for almost six years. Patient stakeholders have been involved at every level of the project, co-creating a set of recommendations that can support the development of guidelines for structured patient input into decision-making for the pharmaceutical industry, regulatory authorities, health technology assessment bodies and reimbursement agencies!

FINDING OUT WHAT PATIENTS PREFER: WHY, WHEN AND HOW TO ASSESS AND USE PATIENT PREFERENCES IN MEDICAL PRODUCT DECISION-MAKING

When: 28 April, 14-16 CEST
What: Open online event

During this event, we presented the take-home messages from the PREFER Recommendations, explaining when and why structured input from patient preference studies can support decision making. We described the PREFER framework, explained how to do a preference study, how to identify and involve key stakeholders, how to pick the right method for your research questions, explore the impact of psychological constructs on preference heterogeneity, and how different approaches and educational materials can support patient’s understanding, giving you more reliable results.

The event was open to everyone with a stake in the decisions that are made along the medical product life-cycle: We invite anyone and everyone who is or will become a patient. All those making decisions from drug discovery to post marketing of medicines. The researchers that drive innovation, the companies that develop medicines, the authorities that approve them, and those that decide what becomes available to patients in different countries and health care systems: the health technology assessors, reimbursement agencies and payers. Everyone interested in patient engagement. Along with the entire preference research community!

The recommendations in full are available on Zenodo, along with a summary of the take-home messages.

PROGRAMME AND SPEAKERS

FINDING OUT WHAT PATIENTS PREFER: WHY, WHEN AND HOW TO ASSESS AND USE PATIENT PREFERENCES IN MEDICAL PRODUCT DECISION-MAKING

When: 28 April, 14-16 CET
What: Open online event

14:00-14:10
Recommendations from the PREFER project
Conny Berlin (Novartis, Project Leader) & Mats Hansson (Uppsala University, Project Coordinator)

14:10-14:30
When and why to do a patient preference study
Isabelle Huys (KU Leuven), Rosanne Janssens (KU Leuven), Irina Cleemput (Belgian Health Care Knowledge Centre) & Bennett Levitan (Janssen R&D)

14:30-15:30
PREFER Recommendations for how to:

• Design and conduct a preference study
  Sheila Dickinson (Novartis) & Kristin Bullok (Eli Lilly)
• Work with key stakeholders
  Isabelle Stoeckert (Bayer) & Antonella Cardone (formerly director of European Cancer Patient Coalition)
• Pick a method
  Esther de Bekker-Grob (Erasmus University Rotterdam) & Karin Groothuis-Oudshoorn (University of Twente)
• Use psychological constructs to help us understand the results
  Cathy Anne Pinto (MSD)
• Help patients through the study (educational materials)
  Ulrik Kihlbom (Uppsala University)

15:30-15:50
Discussion

15:50-16:00
Summary
Conny Berlin (Novartis) & Mats Hansson (Uppsala University)