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Thursday, July 1 • 11:30am - 12:30pm
#424 SL: Meaningful Patient Engagement Highlighted Through Patient Preference Studies and Core Outcome Sets

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Component Type: Session
Level: Intermediate
CE: ACPE 1.00 Knowledge UAN: 0286-0000-21-650-L04-P; CME 1.00; IACET 1.00; RN 1.00

This session will present industry and academic partner perspectives on best practices and lessons learned in relation to patient involvement. We will look at a proposed framework that covers key considerations when designing, conducting and applying the results of a fit-for-purpose preference study, how patients can be meaningfully engaged in the design and implementation of patient preference studies, as well as during core outcome set development.

Learning Objectives

Discuss how a framework for patient preference studies can strengthen considerations about the design, conduct and application of results of a fit-for-purpose preference study; Describe how patients can meaningfully collaborate as research partners on patient preference studies; Identify the different opportunities for patient engagement during core outcome set development that are crucial to developing cohesive and relevant core sets.


Kristin Bullok, PhD


A Framework for Patient Preference Studies to Inform Medical Product Decision-Making: Proposal from IMI PREFER
Sheila Dickinson, MSc

Building Symbiotic Patient Relationships: Strategies for Meaningful Patient Engagement in Core Outcome Set Development
Annie P. Tran, MPH

How and When to Engage Patients and Patient Groups to Improve Survey Recruitment and Administration: Lessons Learned from the IMI-PREFER Rheumatoid Arthritis Case Study
Gwenda Simons, PhD, MA

avatar for Sheila Dickinson

Sheila Dickinson

IMI PREFER Assistant Project Leader & Global Benefit-Risk Lead, Novartis Pharma AG, Switzerland
Sheila Dickinson is a Senior Expert Quantitative Safety Scientist at Novartis. She is on the management board of the IMI PREFER project, which is working on developing guidelines about when and how to perform patient preference studies to support medical product decision-making. Her... Read More →
avatar for Annie Tran

Annie Tran

Senior Research Associate, Center for Medical Technology Policy (CMTP), United States
Annie is a Sr. Research Associate at the Center for Medical Technology Policy, a nonprofit dedicated to improving the quality, relevance, and efficiency of clinical research. She operates under the Green Park Collaborative initiative to develop multi-stakeholder consensus on core... Read More →
avatar for Kristin Bullok

Kristin Bullok

Benefit-Risk Management Scientist, Global Patient Safety, Eli Lilly and Company, United States
Kristin Bullok, PhD, is a research scientist in benefit-risk management at Eli Lilly and Company, Global Patient Safety. Since joining Lilly, she has years of combined experience in conducting structured benefit-risk assessments, consulting on patient preference trade-off studies... Read More →
avatar for Gwenda Simons

Gwenda Simons

Research Fellow, Rheumatology Research Group, Institute of Inflammation and Ageing, University of Birmingham, United Kingdom
Dr Gwenda Simons is a social psychologist with strong focus on healt psychology and behavioural medicine. She currently works as a researcher in the Rheumatology Research Group at the University of Birmingham looking at the perceptions of people at risk of developing rheumatoid arthritis... Read More →

Thursday July 1, 2021 11:30am - 12:30pm EDT
TBD Virtual Event Horsham, PA 19044
  05: Patient Engagement, Session