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本文引用的文献

1
Telemedicine in Complex Diabetes Management.远程医疗在复杂糖尿病管理中的应用。
Curr Diab Rep. 2018 May 24;18(7):42. doi: 10.1007/s11892-018-1015-3.
2
Validation of Patient Reported Outcomes Measurement Information System (PROMIS) Computer Adaptive Tests (CATs) in the Surgical Treatment of Lumbar Spinal Stenosis.验证患者报告结局测量信息系统(PROMIS)在腰椎管狭窄症手术治疗中的计算机自适应测试(CAT)。
Spine (Phila Pa 1976). 2018 Nov 1;43(21):1521-1528. doi: 10.1097/BRS.0000000000002648.
3
Development and validation of the PROMIS Pediatric Sleep Disturbance and Sleep-Related Impairment item banks.开发和验证 PROMIS 儿童睡眠障碍和睡眠相关障碍项目库。
Sleep. 2018 Jun 1;41(6). doi: 10.1093/sleep/zsy054.
4
Web-Based Tools for Text-Based Patient-Provider Communication in Chronic Conditions: Scoping Review.基于网络的慢性病患者与医疗服务提供者文本交流工具:范围综述
J Med Internet Res. 2017 Oct 27;19(10):e366. doi: 10.2196/jmir.7987.
5
The patient portal and abnormal test results: An exploratory study of patient experiences.患者门户网站与异常检查结果:一项关于患者体验的探索性研究。
Patient Exp J. 2015 Spring;2(1):148-154.
6
Impact of National Institutes of Health Gastrointestinal PROMIS Measures in Clinical Practice: Results of a Multicenter Controlled Trial.美国国立卫生研究院胃肠道患者报告结局测量信息系统(PROMIS)指标在临床实践中的影响:一项多中心对照试验的结果
Am J Gastroenterol. 2016 Nov;111(11):1546-1556. doi: 10.1038/ajg.2016.305. Epub 2016 Aug 2.
7
Usability of Commercially Available Mobile Applications for Diverse Patients.面向不同患者的市售移动应用程序的可用性
J Gen Intern Med. 2016 Dec;31(12):1417-1426. doi: 10.1007/s11606-016-3771-6. Epub 2016 Jul 14.
8
Design and feasibility of integrating personalized PRO dashboards into prostate cancer care.将个性化患者报告结局(PRO)仪表盘整合到前列腺癌护理中的设计与可行性
J Am Med Inform Assoc. 2016 Jan;23(1):38-47. doi: 10.1093/jamia/ocv101. Epub 2015 Aug 9.
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Community Engagement Studios: A Structured Approach to Obtaining Meaningful Input From Stakeholders to Inform Research.社区参与工作室:一种从利益相关者那里获取有意义的意见以指导研究的结构化方法。
Acad Med. 2015 Dec;90(12):1646-50. doi: 10.1097/ACM.0000000000000794.
10
Validation of the PROMIS physical function measures in a diverse US population-based cohort of cancer patients.PROMIS身体功能测量指标在美国不同癌症患者群体队列中的验证
Qual Life Res. 2015 Oct;24(10):2333-44. doi: 10.1007/s11136-015-0992-9. Epub 2015 May 3.

患者和医疗服务提供者对患者报告结局门户的看法。

Patient and healthcare provider views on a patient-reported outcomes portal.

机构信息

Department of Biomedical Informatics, Vanderbilt University Medical Center, Nashville, TN, USA.

Department of Internal Medicine, Vanderbilt University Medical Center, Nashville, TN, USA.

出版信息

J Am Med Inform Assoc. 2018 Nov 1;25(11):1470-1480. doi: 10.1093/jamia/ocy111.

DOI:10.1093/jamia/ocy111
PMID:30239733
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC6213079/
Abstract

BACKGROUND

Over the past decade, public interest in managing health-related information for personal understanding and self-improvement has rapidly expanded. This study explored aspects of how patient-provided health information could be obtained through an electronic portal and presented to inform and engage patients while also providing information for healthcare providers.

METHODS

We invited participants using ResearchMatch from 2 cohorts: (1) self-reported healthy volunteers (no medical conditions) and (2) individuals with a self-reported diagnosis of anxiety and/or depression. Participants used a secure web application (dashboard) to complete the PROMIS® domain survey(s) and then complete a feedback survey. A community engagement studio with 5 healthcare providers assessed perspectives on the feasibility and features of a portal to collect and display patient provided health information. We used bivariate analyses and regression analyses to determine differences between cohorts.

RESULTS

A total of 480 participants completed the study (239 healthy, 241 anxiety and/or depression). While participants from the tw2o cohorts had significantly different PROMIS scores (p < .05), both cohorts welcomed the concept of a patient-centric dashboard, saw value in sharing results with their healthcare provider, and wanted to view results over time. However, factors needing consideration before widespread use included personalization for the patient and their health issues, integration with existing information (eg electronic health records), and integration into clinician workflow.

CONCLUSIONS

Our findings demonstrated a strong desire among healthy people, patients with chronic diseases, and healthcare providers for a self-assessment portal that can collect patient-reported outcome metrics and deliver personalized feedback.

摘要

背景

在过去的十年中,公众对管理与个人理解和自我提升相关的健康信息的兴趣迅速扩大。本研究探讨了如何通过电子门户获取患者提供的健康信息,并将其呈现出来,以便为患者提供信息并吸引他们参与,同时也为医疗保健提供者提供信息。

方法

我们使用 ResearchMatch 邀请了两个队列的参与者:(1)自我报告健康的志愿者(无医疗条件)和(2)自我报告患有焦虑和/或抑郁的个体。参与者使用安全的网络应用程序(仪表板)完成 PROMIS®域调查,然后完成反馈调查。一个由 5 名医疗保健提供者组成的社区参与工作室评估了收集和展示患者提供的健康信息的门户的可行性和功能。我们使用双变量分析和回归分析来确定两个队列之间的差异。

结果

共有 480 名参与者完成了研究(239 名健康,241 名焦虑和/或抑郁)。虽然两个队列的参与者的 PROMIS 评分有显著差异(p<0.05),但两个队列都欢迎以患者为中心的仪表板的概念,认为与医疗保健提供者共享结果有价值,并希望随着时间的推移查看结果。然而,在广泛使用之前需要考虑的因素包括针对患者及其健康问题的个性化、与现有信息(如电子健康记录)的集成以及与临床医生工作流程的集成。

结论

我们的研究结果表明,健康人群、慢性病患者和医疗保健提供者都强烈希望有一个自我评估门户,可以收集患者报告的结果衡量指标并提供个性化反馈。