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Exploring consent to use real-world data in lung cancer radiotherapy: decision of a citizens' jury for an 'informed opt-out' approach
Kapadi, A. Turner-Uaandja, H. Holley, R. Wicks, K. Hamrang, L. Turner, B. van Staa, T. Bowden, C. Keane, A. Price, G.
Kapadi, A.
Turner-Uaandja, H.
Holley, R.
Wicks, K.
Hamrang, L.
Turner, B.
van Staa, T.
Bowden, C.
Keane, A.
Price, G.
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Abstract
An emerging approach to complement randomised controlled trial (RCT) data in the development of radiotherapy treatments is to use routinely collected 'real-world' data (RWD). RWD is the data collected as standard-of-care about all patients during their usual cancer care pathway. Given the nature of this data, important questions remain about the permissibility and acceptability of using RWD in routine practice. We involved and engaged with patients, carers and the public in a two-day citizens' jury to understand their views and obtain decisions regarding two key issues: (1) preferred approaches to consent for the use of RWD within the context of patients receiving radiotherapy for lung cancer in RAPID-RT and (2) how RWD use should be best communicated to patients. Individual views were polled using questionnaires at various stages of the jury, whilst group discussion activities prompted further dialogue about the rationale behind choices of consent. Key decisions obtained from the jury include: (1) an opt-out approach to consent for the use of RWD; (2) the opt-out approach to consent should be informed. Furthermore, it was advised that information and communication regarding the consent process and use of RWD should be accessible, clear and available in a variety of formats. It is important that the consent process for patient data use is underpinned by principles of autonomy and transparency with clear channels of communication between those asking for and giving consent. Moreover, the process of seeking consent from patients should be proportionate to the risks presented from their participation.
Authors
Kapadi, A.
Turner-Uaandja, H.
Holley, R.
Wicks, K.
Hamrang, L.
Turner, B.
van Staa, T.
Bowden, C.
Keane, A.
Price, G.
Faivre-Finn, C.
French, D.
Sanders, C.
Holm, S.
Devaney, S.
Turner-Uaandja, H.
Holley, R.
Wicks, K.
Hamrang, L.
Turner, B.
van Staa, T.
Bowden, C.
Keane, A.
Price, G.
Faivre-Finn, C.
French, D.
Sanders, C.
Holm, S.
Devaney, S.
Affiliation
Manchester Centre for Health Psychology, Division of Psychology and Mental Health, School of Health Sciences, Faculty of Biology, Medicine and Health, The University of Manchester, Manchester, UK.
Vocal, Research and Innovation Division, Manchester University NHS Foundation Trust, Manchester, UK.
Department of Radiotherapy Related Research, Division of Cancer Sciences, School of Medical Sciences, Faculty of Biology, Medicine and Health, The University of Manchester, Manchester, UK.
RAPID-RT PPI Advisory Group, Manchester, UK.
Centre for Health Informatics and Health Data Research UK North, Division of Informatics, Imaging and Data Science, School of Health Sciences, The University of Manchester, Manchester, UK.
Centre for Social Ethics and Policy, Division of Law, School of Social Sciences, The Faculty of Humanities, The University of Manchester, Manchester, UK.
Department of Clinical Oncology, The Christie NHS Foundation Trust, Manchester, UK.
Centre for Primary Care and Health Services Research, NIHR Greater Manchester Patient Safety Research Collaboration, Division of Population Health, Health Services Research and Primary Care, School of Health Sciences, Faculty of Biology, Medicine and Health, The University of Manchester, Manchester, UK.
Centre for Social Ethics and Policy, Division of Law, School of Social Sciences, The Faculty of Humanities, The University of Manchester, Manchester, UK. sarah.devaney@manchester.ac.uk.
Description
Date
2025
Publisher
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Article
Citation
Kapadi A, Turner-Uaandja H, Holley R, Wicks K, Hamrang L, Turner B, et al. Exploring Consent to Use Real-World Data in Lung Cancer Radiotherapy: Decision of a Citizens' Jury for an 'Informed Opt-Out' Approach. Health care analysis : HCA : journal of health philosophy and policy. 2025 Jun;33(2):192-213. PubMed PMID: 39924606. Pubmed Central PMCID: PMC12053208. Epub 2025/02/10. eng.