Patient Experience Data
PED Recycle
Using patient experience as evidence for decision-making
Important things for fostering an understanding and practice of PED
To make it an initiative that is widely understood by all stakeholders.
PEDs can be used for decision-making in various healthcare settings.
The use of PEDs is valuable from various perspectives.
We will not only discuss methodologies, but also accumulate case studies and share the experiential knowledge gained from them.
Rather than simply collecting data, we aim for patients to continuously participate in order to maximize the value of the data obtained.
To enable patients to interpret and understand the meaning of the data.
Communicating with patients to enable their participation (lay communication)
Participate in the increasingly active international discussions on the application of PEDs to policies and institutions.
What is PED?
About PED
Video: 1st Lunchtime Short Seminar (from November 2025)
PED refers to data that represents the patient's experiences, thoughts, needs, and priorities.
<Definition by the U.S. Food and Drug Administration (US FDA) (translated by YORIAILab)>
All symptoms of the patient's illness and their natural course
The impact of illness on patients' physical function and quality of life
Patient treatment experience
Input (thoughts/opinions) on which outcomes (course of illness/symptoms) are important for the patient.
Patient outcomes and treatment preferences
The relative importance of the problem as clarified by the patient
PED includes the following data
The descriptions include not only the characteristics of the group, but also the experiences of individuals.
It can be expressed not only numerically, but also in letters and words.
It can be conveyed not only from the examination room, but also from everyday life.
In addition to clinical trials, questionnaires, interviews,
It can also be obtained from social listening, etc.It can be collected and used not only by medical professionals, researchers, and companies, but also by patients, families, and supporters.
PED creates value from a new perspective on treatment and care.
Patient participation is essential for the effective use of PEDs.
(Modified from the Global Patient Experience Data Navigator introduction materials)
Roundtable on PE and PED
PE & PED Round Table
1st session: October 18, 2025 (Sat) 14:00-18:00
Agenda: Japanese ➡️ English ➡️
Materials and recording: ➡️ *For panelists and participants only
Meeting minutes
English (original): Yagi N, Hayley C, et al. Proceedings of the First Patient Engagement (PE) and Patient Experience Data (PED) Roundtable in Japan: Advancing the Structured Implementation of PED. Clin Eval 2026;53(3):W1-W16. ➡️
Japanese translation: Yagi, Chapman, et al. The 1st Roundtable on Patient Participation and Patient Experience Data (PED) in Japan: Towards the Systematic Implementation of PED. Clinical Evaluation 2026;53(3):459-71 (W17-W32). ➡️
PED Training Materials Search Tool
PED Training Resource Finder
Coming soon
This tool was developed by the Global Patient Engagement Division of Boehringer Ingelheim AG in Germany, and has been generously transferred to YORIAILab free of charge so that it can be widely used by many people. The original tool is provided in English, and YORIAILab is responsible for finalizing the Japanese translation.
Please use this in conjunction with the Japanese version of the Global PED Navigator tool provided by PFMD.
Reference materials
Useful Resources
Presentation materials
Website
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References
International Council for Harmonisation of Technical Requirements for Pharmaceuticals for Human Use (ICH). Final Concept Paper E22 EWG: General Considerations for Patient Preference Studies. [Internet] May 27, 2024 [cited February 1, 2025].
Available from https://www.ich.org/page/efficacy-guidelines
21st Century Cure Act [Internet], 2016 Dec 13 [cited 2025 Feb 1] (United States of America).
Available at https://www.fda.gov/regulatory-information/selected-amendments-fdc-act/21st-century-cures-act
21st Century Cure Act [Internet], 2016 Dec 13 [cited 2025 Feb 1] (United States of America).
Available at https://www.fda.gov/regulatory-information/selected-amendments-fdc-act/21st-century-cures-act
US Department of Health and Human Services Food and Drug Administration. Patient-Focused Drug Development: Collecting Comprehensive and Representative Input: Guidance for Industry, Food and Drug Administration Staff, and Other Stakeholders . [Internet] 2020 Jun [cited 2025 Feb 1]. Available at https://www.fda.gov/regulatory-information/search-fda-guidance-documents/patient-focused-drug-development-collecting-comprehensive-and-representative-input
US Department of Health and Human Services Food and Drug Administration. Patient-Focused Drug Development: Methods to Identify What Is Important to Patients : Guidance for Industry, Food and Drug Administration Staff, and Other Stakeholders . [Internet] 2022 Feb [cited 2025 Feb 1]. Available at https://www.fda.gov/regulatory-information/search-fda-guidance-documents/patient-focused-drug-development-collecting-comprehensive-and-representative-input