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面向癌症患者或康复者的数字健康门户网站:患者驱动的范围综述。

Digital Health Portals for Individuals Living With or Beyond Cancer: Patient-Driven Scoping Review.

作者信息

Ouellet Steven, Naye Florian, Supper Wilfried, Cachinho Chloé, Gagnon Marie-Pierre, LeBlanc Annie, Laferrière Marie-Claude, Décary Simon, Sasseville Maxime

机构信息

Faculté des sciences infirmières, Université Laval, Québec, QC, Canada.

École de réadaptation, Faculté de médecine et des sciences de la santé, Université de Sherbrooke, Sherbrooke, QC, Canada.

出版信息

JMIR Cancer. 2025 Jul 18;11:e72862. doi: 10.2196/72862.

DOI:10.2196/72862
PMID:40680274
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC12317290/
Abstract

BACKGROUND

Digital health portals are online platforms allowing individuals to access their personal information and communicate with health care providers. While digital health portals have been associated with improved health outcomes and more streamlined health care processes, their impact on individuals living with or beyond cancer remains underexplored.

OBJECTIVE

This scoping review aimed to (1) identify the portal functionalities reported in studies involving individuals living with or beyond cancer, as well as the outcomes assessed, and (2) explore the diversity of participant characteristics and potential factors associated with portal use.

METHODS

We conducted a scoping review in accordance with the JBI methodology (formerly the Joanna Briggs Institute) and the PRISMA-ScR (Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews) guidelines. We included primary research studies published between 2014 and 2024 that involved participants living with or beyond cancer, had access to personal health information, and assessed at least one outcome related to health or the health care system. We searched the Embase, Web of Science, MEDLINE (Ovid), and CINAHL Plus with Full Text databases. Five reviewers independently screened all titles, abstracts, and full texts in duplicate using Covidence. We extracted data on study design, participant characteristics, portal functionalities, outcomes assessed, and PROGRESS-Plus (place of residence; race, ethnicity, culture, or language; occupation; gender or sex; religion; education; socioeconomic status; and social capital-Plus) equity factors.

RESULTS

We included 44 studies; most were conducted in the United States (n=30, 68%) and used quantitative (n=23, 52%), mixed methods (n=11, 25%), or qualitative (n=10, 23%) designs. The most common portal features were access to test results (28/44, 64%) and secure messaging (30/44, 68%). Frequently reported services included appointment-related functions (19/44, 43%), educational resources (13/44, 30%), and prescription management features (11/44, 25%). Behavioral and technology-related outcomes were the most frequently assessed (37/44, 84%), followed by system-level (19/44, 43%), psychosocial (16/44, 36%), and clinical outcomes (5/44, 11%). Overall, 43% (19/44) of the studies addressed PROGRESS-Plus factors. Age was the most frequently reported (13/19, 68%), followed by socioeconomic status (10/19, 53%), race or ethnicity (7/19, 37%), and gender or sex (7/19, 37%). Social capital (2/19, 11%), occupation (1/19, 5%), and disability (1/19, 5%) were rarely considered, and religion was not reported in any study.

CONCLUSIONS

While digital health portals enhance patient engagement, their clinical impact and equity implications remain insufficiently evaluated. We found disparities in functionalities, outcomes, and PROGRESS-Plus representation. To promote equitable benefits, future studies should adopt inclusive designs and evaluation strategies that address diverse outcomes and integrate social determinants of health.

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/0571/12317290/a990cbd059c5/cancer_v11i1e72862_fig1.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/0571/12317290/a990cbd059c5/cancer_v11i1e72862_fig1.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/0571/12317290/a990cbd059c5/cancer_v11i1e72862_fig1.jpg
摘要

背景

数字健康门户是允许个人访问其个人信息并与医疗保健提供者进行沟通的在线平台。虽然数字健康门户已被证明与改善健康结果和简化医疗保健流程相关,但它们对癌症患者或癌症康复者的影响仍未得到充分探索。

目的

本范围综述旨在(1)确定在涉及癌症患者或癌症康复者的研究中报告的门户功能以及评估的结果,(2)探索参与者特征的多样性以及与门户使用相关的潜在因素。

方法

我们按照JBI方法(原乔安娜·布里格斯研究所方法)和PRISMA-ScR(系统评价和元分析扩展的范围综述的首选报告项目)指南进行了范围综述。我们纳入了2014年至2024年发表的主要研究,这些研究涉及癌症患者或癌症康复者,可访问个人健康信息,并评估了至少一项与健康或医疗保健系统相关的结果。我们检索了Embase、科学网、MEDLINE(Ovid)和CINAHL Plus全文数据库。五名评审员使用Covidence独立对所有标题、摘要和全文进行了重复筛选。我们提取了关于研究设计、参与者特征、门户功能、评估结果以及PROGRESS-Plus(居住地;种族、民族、文化或语言;职业;性别;宗教;教育;社会经济地位;以及社会资本加)公平因素的数据。

结果

我们纳入了44项研究;大多数研究在美国进行(n = 30,68%),采用定量(n = 23,52%)、混合方法(n = 11,25%)或定性(n = 10,23%)设计。最常见的门户功能是访问检测结果(28/44,64%)和安全消息传递(30/44,68%)。经常报告的服务包括预约相关功能(19/44,43%)、教育资源(13/44,30%)和处方管理功能(11/44,25%)。行为和技术相关结果是评估最频繁的(37/44,84%),其次是系统层面(19/44,43%)、心理社会(16/44,36%)和临床结果(5/44,11%)。总体而言,43%(19/44)的研究涉及PROGRESS-Plus因素。年龄是报告最频繁的(13/19,68%),其次是社会经济地位(10/19,53%)、种族或民族(7/19,37%)以及性别(7/19,37%)。社会资本(2/19,11%)、职业(1/19,5%)和残疾(1/19,5%)很少被考虑,且没有任何研究报告宗教因素。

结论

虽然数字健康门户增强了患者参与度,但其临床影响和公平性影响仍未得到充分评估。我们发现功能、结果和PROGRESS-Plus代表性方面存在差异。为了促进公平受益,未来的研究应采用包容性设计和评估策略,以解决多样化的结果并整合健康的社会决定因素。

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Analysis of Publications on Health Information Management Using the Science Mapping Method: A Holistic Perspective.运用科学映射法对健康信息管理相关出版物的分析:整体视角
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JMIR Form Res. 2023 Dec 22;7:e50550. doi: 10.2196/50550.
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J Natl Cancer Inst. 2024 Mar 7;116(3):476-484. doi: 10.1093/jnci/djad225.
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JMIR Hum Factors. 2023 Nov 2;10:e47624. doi: 10.2196/47624.
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