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患者如何塑造数字医学?对患者及公众参与和介入神经疾病数字健康技术开发的快速回顾。

How can patients shape digital medicine? A rapid review of patient and public involvement and engagement in the development of digital health technologies for neurological conditions.

作者信息

Hanrahan Megan, Wilson Cameron, Keogh Alison, Barker Sandra, Rochester Lynn, Brittain Katie, Lumsdon Jack, McArdle Ríona

机构信息

Population Health Sciences Institute, Newcastle University, Newcastle, UK.

School of Clinical Medicine, Department of Public Health and Primary Care, University of Cambridge, Cambridge, UK.

出版信息

Expert Rev Pharmacoecon Outcomes Res. 2025 Feb;25(2):137-154. doi: 10.1080/14737167.2024.2410245. Epub 2024 Oct 7.

DOI:10.1080/14737167.2024.2410245
PMID:39376020
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC11789707/
Abstract

INTRODUCTION

Patient and Public Involvement and Engagement (PPIE) involves working '' or '' patients and the public, rather than ',' ',' or '' them, and is integral to neurological and digital health research. This rapid review examined PPIE integration in the development and implementation of digital health technologies for neurological conditions.

METHODS

Key terms were input into six databases. Included articles were qualitative studies or PPIE activities involving patient perspectives in shaping digital health technologies for neurological conditions. Bias was evaluated using the NICE qualitative checklist, with reporting following PRISMA guidelines.

RESULTS

2,140 articles were identified, with 28 included. Of these, 25 were qualitative studies, and only three were focused PPIE activities. Patient involvement was mostly limited to one-off consultations during development.There was little evidence of PPIE during implementation, and minimal reporting on its impact.

CONCLUSIONS

PPIE has been inconsistently reported in this research area, highlighting the need for more guidance and best-practice examples This review used a UK-based definition of PPIE, which may have excluded relevant activities from other countries. Future reviews should broaden terminology to capture PPIE integration globally.

摘要

引言

患者及公众参与和融入(PPIE)涉及与患者和公众“合作”而非“为他们代言”“关于他们”“代表他们”或“替代他们”开展工作,并且是神经学和数字健康研究不可或缺的一部分。本快速综述考察了PPIE在用于神经疾病的数字健康技术的开发和实施过程中的整合情况。

方法

将关键术语输入六个数据库。纳入的文章为定性研究或涉及患者在塑造用于神经疾病的数字健康技术方面观点的PPIE活动。使用英国国家卫生与临床优化研究所(NICE)定性检查表评估偏倚,并按照系统评价和Meta分析的首选报告项目(PRISMA)指南进行报告。

结果

共识别出2140篇文章,纳入了28篇。其中,25篇为定性研究,仅有3篇是重点突出的PPIE活动。患者参与大多局限于开发过程中的一次性咨询。在实施过程中几乎没有PPIE的证据,且对其影响的报告极少。

结论

该研究领域对PPIE的报告并不一致,这凸显了对更多指导和最佳实践案例的需求。本综述采用了基于英国的PPIE定义,这可能排除了其他国家的相关活动。未来的综述应拓宽术语范围,以全面涵盖全球范围内的PPIE整合情况。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/a3fb/11789707/291a9b6028d5/IERP_A_2410245_F0001_OC.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/a3fb/11789707/291a9b6028d5/IERP_A_2410245_F0001_OC.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/a3fb/11789707/291a9b6028d5/IERP_A_2410245_F0001_OC.jpg

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2
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4
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5
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