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患者和公众参与患者报告结局测量:演进而非革命。

Patient and public involvement in patient-reported outcome measures: evolution not revolution.

机构信息

Royal College of Nursing Research Institute, University of Warwick, Coventry, UK.

出版信息

Patient. 2012;5(2):79-87. doi: 10.2165/11597150-000000000-00000.

Abstract

This paper considers the potential for collaborative patient and public involvement in the development, application, evaluation, and interpretation of patient-reported outcome measures (PROMs). The development of PROMs has followed a well trodden methodological path, with patients contributing as research subjects to the content of many PROMs. This paper argues that the development of PROMs should embrace more collaborative forms of patient and public involvement with patients as research partners in the research process, not just as those individuals who are consulted or as subjects, from whom data are sourced, to ensure the acceptability, relevance, and quality of research. We consider the potential for patients to be involved in a much wider range of methodological activities in PROM development working in partnership with researchers, which we hope will promote paradigmal evolution rather than revolution.

摘要

本文考虑了在开发、应用、评估和解释患者报告结局测量(PROMs)方面,患者和公众共同参与的潜力。PROMs 的开发遵循了一条成熟的方法学路径,患者作为研究对象为许多 PROMs 的内容做出了贡献。本文认为,PROMs 的开发应该采用更具协作性的患者和公众共同参与形式,让患者作为研究伙伴参与研究过程,而不仅仅是作为那些被咨询的人或作为数据源的对象,以确保研究的可接受性、相关性和质量。我们考虑了患者与研究人员合作,参与 PROM 开发中更广泛的方法学活动的潜力,我们希望这将促进范式的演变,而不是革命。

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