Patient Experience Data
PED Hub
Patient Experience Data (PED)
"Patient Experience Data" is data that describes patients' experiences, beliefs, needs and preferences relating to:
<Definition by the US Food and Drug Administration (US FDA)>
Ensure that the initiative is widely understood by all stakeholders
PEDs can be used for decision-making in a variety of healthcare settings
The use of PED is valuable for many different reasons
Not only will we discuss methodologies, but we will also accumulate case studies and share the resulting knowledge.
Rather than simply collecting data, patients will be continuously involved in order to maximize the value of the data obtained.
Help patients interpret and understand the data
Communicating to involve patients (lay communication)
Participate in the increasingly active international discussions on the application of PED to policies and systems
Patient Experience Data (PED)
"Patient Experience Data" is data that describes patients' experiences, beliefs, needs and preferences relating to:
<Definition by the US Food and Drug Administration (US FDA)>
All symptoms of the patient's illness and its natural history
The impact of the disease on the patient's physical functioning and quality of life
Patient Treatment Experience
Input about which outcomes are important to patients
Patient outcomes and treatment preferences
The relative importance of the problem as defined by the patient
The PED contains the following data:
Describes individual experiences as well as group characteristics
Not only numerical values, but also letters and words
Not only in the examination room, but also in everyday life
Not only clinical trials, but also questionnaires, interviews,
Also obtained from social listening etc.It can be collected and used not only by medical professionals, researchers, and companies, but also by patients, their families, and supporters.
PED refers to a broader range of data types, including Patient Reported Outcomes (PROs).
Patient engagement (PE) is essential for utilizing PEDs
(Modified from the Global Patient Experience Data Navigator introduction materials)
(From the first Lunchtime Short Seminar)
Patient Experience Data Training Materials Search Tool
Coming soon
*This tool was developed by the Global Patient Engagement division of Boehringer Ingelheim in Germany and will be provided to YORIAILab free of charge so that it can be widely used by a wide range of people. The original tool is provided in English. The Japanese translation is being finalized by YORIAILab.
*Currently, most training materials are available in English.
Please use this together with the Japanese version of the Global PED Navigator Tool provided by PFMD.
[Reference materials]
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