Applying the Science of Patient Engagement: Developing a guide for engagement methodologies

Julie Dietrich jdietric@amgen.com

Abstract

Just as we apply the appropriate clinical study design to address the questions of interest about a product, we want to apply the appropriate patient engagement methodologies to the questions of interest about a program / study design and operational plan. Several methodologies exist to obtain patient input and feedback, from online surveys and patient panels to study simulations and co-creation sessions. Using psychometric principles, these methodologies can be mapped to specific questions of interest from the preclinical phase through the end of product life. This work will generate a "guide" to patient engagement methodologies for ease of application across Industry and Patient Groups.

The workshop will address the development and application of such a guide, including the creation of sample engagement roadmaps and establishment of a common engagement language.

We need to understand the voice of the patient to be able to optimize our program and study designs and operational plans. The “right” methodologies need to be selected at the right time. A guide for the selection and application of each method can help meet the needs of many segments of the MedX audience:

Patient Groups: Share the guide with interested patients and help patients prepare to engage with researchers.

Patients: Review the guide to better understand how their input / feedback fits into the broader context of patient engagement; become familiar with the terms used in the guide to facilitate communication with the researchers.

Sponsor Program Leaders: Support communication to executives about the importance of patient engagement and why sufficient planning time is critical to program success; support requests for earlier program funding to allow for timely patient engagement activities.

Sponsor Study Designers and Operational Managers: Follow the guide to apply a framework to define the questions of interest and customize a patient engagement roadmap.

Ethics Boards and Organizational Legal / Compliance / Privacy Groups: Review the guide and be prepared to advise on proposed engagement activities; develop guidance proactively to help organizations fully harness opportunities by better understanding the restrictions.

The workshop can support a collaborative development effort, creating mutual understanding of each group's challenges and generating more innovative solutions.  
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