“The use of patient-reported measures in routine clinical settings is rapidly expanding because many healthcare systems are moving towards patient-centered care,” said Mühlbacher and Stolk in their opening editorial. “In addition to clinically reported outcome measures, the experience of the care process matters too. Patient-reported experience measures have become an important tool for policy makers who wish to understand how well healthcare delivery is aligned with patients’ goals.”
Compared with health preference research, patient-reported experience measures provide a fuller picture of how well a healthcare system meets the needs of patients by combining indicators at the individual and organizational level. The papers in the Value in Health themed section were intended to bring together current research on patient experience, patient-reported experience measures, patient journeys, patient preferences, and utilization of the data produced. Together, the studies illustrate the wide range of activities that contribute to patient-centered care and optimizing of the patient experience.
Mühlbacher and Stolk’s introductory editorial, “Patient-Reported Satisfaction, Experiences, and Preferences: Same but Different?” includes an overview of the topic and introduces the 5 articles in the series:
- “Patient and Caregiver Experience Decision Factors in Treatment Decision Making: Results of a Systematic Literature Review of Multiple Myeloma Decision Aids,” by Mimi Choon-Quinones, Dirk Hose, Zoltán Kaló, Tamás Zelei, Jean-Luc Harousseau, Brian Durie, Paul Keown, Mike Barnett, and Ivett Jakab
- “Patient Expectations About Palliative Treatment for Symptomatic Spinal Metastases: A Qualitative Study,” by Roxanne Gal, Raphäele Charest-Morin, Jorrit-Jan Verlaan, Charles Fisher, Hester Wessels, Helena Verkooijen, and Anne Versteeg
- “Developing Patient-Centered Real-World Evidence: Emerging Methods Recommendations From a Consensus Process,” by Elisabeth Oehrlein, Silke Schoch, Mehmet Burcu, Julia McBeth, Jennifer Bright, Chris Pashos, Richard Willke, Thelma Love, T. Joseph Mattingly II, and Eleanor Perfetto on behalf of the Patient Centered Real-World Evidence Working Group
- “Enhancing Patient-Centricity of Real-World Data Research: An Exploratory Analysis Using the Patient Experience Mapping Toolbox,” by Elisabeth Oehrlein, Mehmet Burcu, Silke Schoch, and Laura Gressler
- “A Data-Driven Approach to Support the Understanding and Improvement of Patient’s Journeys: A Case Study Using Electronic Health Records of an Emergency Department,” by Farhood Rismanchian, Sara Kassani, Seyed Shavarani, and Young Lee
Delivering what patients want requires a deep understanding of the diversity of patient preferences, as obtained from preference research, which in the process of care must be paired with ways for patients to communicate their needs and wants and that avoid use of strategies they find disempowering. Decision aids and shared decision-making processes need to have adequate room for patients to influence decisions about the care they receive, which needs to be evaluated in context of the received care.
“A view that emerges from the papers,” concluded Mühlbacher and Stolk, “is that we are still on a path to unlock the potential of patient experience research. Papers in this themed section reflect a significant investment in the development of protocols and support for such studies. However, major challenges remain in leveraging existing data and how to supplement it with targeted additional data collection to understand the difference between the actual and the optimal patient experience.”
Additional information on ISPOR’s work on patient engagement can be found on the Society’s Patient Engagement in HEOR webpage.
ISPOR, the professional society for health economics and outcomes research (HEOR), is an international, multistakeholder, nonprofit dedicated to advancing HEOR excellence to improve decision making for health globally. The Society is the leading source for scientific conferences, peer-reviewed and MEDLINE®-indexed publications, good practices guidance, education, collaboration, and tools/resources in the field.
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ABOUT VALUE IN HEALTH
Value in Health (ISSN 1098-3015) is an international, indexed journal that publishes original research and health policy articles that advance the field of health economics and outcomes research to help healthcare leaders make evidence-based decisions. The journal’s 2021 impact factor score is 5.156 and its 5-year impact factor score is 6.779. Value in Health is ranked 9th of 88 journals in health policy and services, 18th of 109 journals in healthcare sciences and services, and 50th of 381 journals in economics. Value in Health is a monthly publication that circulates to more than 10,000 readers around the world.
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