Multi-stakeholder use of patient experience data (PED): current state and future opportunities for the application of PED to inform decision-making
Kanu, Chisom, Abel, Jessica L., Knight, Sarah L., Williamson, Nicola, Ho, Calvin N., Rodriguez-Leboeuf, Ana Maria, Carmichael, Chloe, Wac, Katarzyna, Herzog, Rainer, Vallow, Susan, Oberdhan, Dorothee, Kaneyasu, Takako and Chassany, Olivier
(2026)
Multi-stakeholder use of patient experience data (PED): current state and future opportunities for the application of PED to inform decision-making.
Journal of Patient-Reported Outcomes, 10 (1): 71.
p. 71.
ISSN 2509-8020
Abstract
Patient experience data (PED) encompass information on patient’s experiences, disease impact, and treatment preferences. PED are critical inputs to the drug development process and help ensure medicines are developed with the interests of patients in mind. The authors (all members of the Industry Special Interest Group and Regulatory and Health Technology Assessment Engagement Special Interest Group of the International Society for Quality of Life Research) have conducted a scoping review of how regulatory agencies, health technology assessment (HTA) bodies, private payers, clinicians, and patients currently use PED for decision-making. Recommendations are provided to address key challenges influencing multi-stakeholder use of PED.
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| Additional Information: ** Article version: VoR
** From Springer Nature via Jisc Publications Router
** History: received 19-03-2025;
accepted 22-02-2026;
registration 23-02-2026;
epub 24-03-2026;
online 24-03-2026;
version-of-record 04-05-2026;
collection 01-12-2026.
** Licence for VoR version of this article: http://creativecommons.org/licenses/by/4.0/
** Acknowledgements: The authors would like to thank Robyn Carson, Ashley Slagle, Wen-Hung Chen, and ISOQOL Board of Directors. Contributions were made to this manuscript by members of the ISOQOL Industry and Regulatory and Health Technology Assessment Engagement (R&HE) SIGs. It does not necessarily reflect the views of ISOQOL, the Industry SIG, the R&HE SIG or ISOQOL Leadership. The purpose of the Industry SIG is to connect individuals from academia with professionals representing the pharmaceutical, biotechnology, medical device and consulting industries who share a common interest in the application of health related QOL research. We are interested in innovative methods and research related to COAs, including PROs. The purpose of the R&HE SIG is to routinely and actively engage with regulatory agencies and health technology assessment (HTA) bodies to address critical applied measurement issues raised by these entities or that emerge from their public communications (e.g., guidance documents, reflection papers, workshops). This collaboration embraces a broad measurement perspective and enables us to build scientifically-based patient-focused recommendations regarding the use of clinical outcome assessments (COAs) in the evaluation of therapeutic interventions aimed at advancing human health and well-being. The International Society for Quality of Life Research (ISOQOL) is a global community of researchers, clinicians, health care professionals, industry professionals, consultants, and patient research partners advancing health related quality of life research (HRQL). Together, we are creating a future in which patient perspective is integral to health research, care and policy. |
| Uncontrolled Keywords: Patient engagement, Drug regulation, Health technology assessment, Patient experience data |
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| Date Deposited: 23 May 2026 14:32 |
| Last Modified: 23 May 2026 14:32 |
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