Patient-reported outcomes are increasingly collected in clinical trials and in routine clinical practice, but strategies must be taken to include underserved groups to avoid increasing health disparities.
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M.J.C., S.C.R. and A.R. conceived of the idea; M.J.C. developed the first draft; R.V. and R.W. provided patient input. All authors made substantial revisions and approved the final manuscript.
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M.J.C. receives funding from the National Institute for Health Research (NIHR), UK Research and Innovation (UKRI), NIHR Birmingham Biomedical Research Centre, the NIHR Surgical Reconstruction and Microbiology Research Centre, NIHR ARC West Midlands, UK SPINE, European Regional Development Fund – Demand Hub and Health Data Research UK at the University of Birmingham and University Hospitals Birmingham NHS Foundation Trust, Innovate UK (part of UKRI), Macmillan Cancer Support, UCB Pharma, Janssen, GSK and Gilead. M.C. has received personal fees from Astellas, Aparito Ltd, CIS Oncology, Takeda, Merck, Daiichi Sankyo, Glaukos, GSK and the Patient-Centered Outcomes Research Institute (PCORI) outside of the submitted work. In addition, a family member owns shares in GSK. O.L.A. receives funding from the NIHR Birmingham BRC, West Midlands, Birmingham, NIHR ARC West Midlands, UKRI, Health Foundation, Janssen, Gilead and GSK; and declares personal fees from Gilead Sciences Ltd, Merck and GSK outside of the submitted work. S.E.H. receives funding from the NIHR Applied Research Collaboration (ARC) West Midlands and UKRI; and declares personal fees from Cochlear Ltd and Aparito Ltd outside of the submitted work. A.M.S. has received unrelated consulting fees or speaking honoraria in the last 24 months from Navigating Cancer, Association of Community Cancer Centers, Pfizer, Genentech, Purchaser Business Group on Health and Henry Ford Cancer Center; and receives unrelated research funding from PCORI, NIH, AHRQ, Bladder Cancer Advocacy Network, Hematology/Oncology Pharmacy Association (HOPA), Cancer and Aging Research Group (CARG), Sivan Innovation and UroGen Pharma Ltd. C.M. receives funding from NIHR Surgical Reconstruction and Microbiology Research Centre (SRMRC), UKRI, and declares personal fees from Aparito Ltd outside the submitted work. G.T. receives funding from a NIHR Postdoctoral Fellowship Award. N.E.A. receives funding from a NIHR Clinical Doctoral Research Fellowship Award; and declares personal fees from GSK outside of the submitted work. G.V. was past president of ISOQOL, the European Organisation for Research and Treatment of Cancer (EORTC) Quality of Life Group; and has received consultancy fees from Roche, Eisai, Novartis, Seattle Genetics and Sanofi related to her clinical work in breast cancer and grants from the Yorkshire Cancer Research, Pfizer, IQVIA, Breast Cancer Now and the EORTC Quality of Life Group. P.K. is an employee of Merck Healthcare KGaA, Darmstadt, Germany. All other authors declare no competing interests. The views expressed in this article are those of the author(s) and not necessarily those of the NIHR, Medicines and Healthcare products Regulatory Agency, Health Research Authority or the Department of Health and Social Care.
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Calvert, M.J., Cruz Rivera, S., Retzer, A. et al. Patient reported outcome assessment must be inclusive and equitable. Nat Med 28, 1120–1124 (2022). https://doi.org/10.1038/s41591-022-01781-8
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DOI: https://doi.org/10.1038/s41591-022-01781-8
