使用设计科学方法的阿尔茨海默病电子个人健康记录的最小数据集

IF 3.4 3区 医学 Q1 HEALTH POLICY & SERVICES
Parastoo Amiri , Zahra Niazkhani , Habibollah Pirnejad , Kambiz Bahaadinbeigy , Mahdie Shojaei Baghini
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引用次数: 0

摘要

目的老年痴呆症等慢性病患者医疗信息的长期管理是复杂而乏味的。电子个人健康记录(ePHR)可以通过维护来自各个中心的医疗保健数据历史来帮助患者。本研究的目的是开发一个最小数据集(MDS),使用设计科学方法为阿尔茨海默病(AD)患者的护理人员设计ePHR,并确定在伊朗顺利实施ePHR的必要措施。方法本研究于2020年2月至2021年10月在克尔曼进行。为了告知护理人员有关ePHR的信息,举行了信息会议,并使用了图片方法。然后,对参与阿尔茨海默病患者护理的7名医生和13名护理人员进行了20次半结构化访谈。使用基于信息系统研究(ISR)框架的主题分析,对数据进行编码和分析。结果AD ePHR的MDS包含178个数据元素,分为六个主要部分。参与者认为使用ePHR对于实现高质量护理至关重要。使用ePHR可以作为收集每个阿尔茨海默病患者在不同疾病阶段的准确病史并监测其行为变化的主要方法。数据保密和安全被认为是实施AD ePHR的主要措施之一。结论本研究确定了一种AD特异性MDS,这是未来为阿尔茨海默病患者推出ePHR的第一个重要步骤。MDS是根据神经学家和护理人员的要求开发的。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
The minimum data set of electronic personal health records for Alzheimer's disease using design science methodology

Objective

Long-term management of healthcare information for chronic patients such as Alzheimer's is complex and tedious. An electronic Personal Health Record (ePHR) can help patients by maintaining a history of healthcare data from various centers. The purposes of this research were to develop a minimum data set (MDS) to design an ePHR for caregivers of patients with Alzheimer's disease (AD) using design science methodology and to identify the necessary measures for a smooth ePHR implementation in Iran.

Methods

This study was performed in Kerman from February 2020 to October 2021. To inform caregivers about ePHRs, information sessions were held and a pictorial method was used. Then, 20 semi-structured interviews were conducted with seven physicians and 13 caregivers involved in the care of Alzheimer's patients. Using thematic analysis based on the Information System Research (ISR) framework, the data were encoded and analyzed.

Results

The MDS of an ePHR for AD contained 178 data elements, categorized into six main sections. The participants considered the use of an ePHR essential to achieve quality care. Using an ePHR can serve as the main method of collecting accurate histories of each Alzheimer's patient in different disease stages and monitoring their behavioral changes. Data confidentiality and security were considered as one of the main measures for AD ePHR implementation.

Conclusion

This study identified an AD-specific MDS, as the first major step in launching ePHRs for Alzheimer's patients in the future. The MDS was developed based on the requirements of neurologists and caregivers.

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来源期刊
Health Policy and Technology
Health Policy and Technology Medicine-Health Policy
CiteScore
9.20
自引率
3.30%
发文量
78
审稿时长
88 days
期刊介绍: Health Policy and Technology (HPT), is the official journal of the Fellowship of Postgraduate Medicine (FPM), a cross-disciplinary journal, which focuses on past, present and future health policy and the role of technology in clinical and non-clinical national and international health environments. HPT provides a further excellent way for the FPM to continue to make important national and international contributions to development of policy and practice within medicine and related disciplines. The aim of HPT is to publish relevant, timely and accessible articles and commentaries to support policy-makers, health professionals, health technology providers, patient groups and academia interested in health policy and technology. Topics covered by HPT will include: - Health technology, including drug discovery, diagnostics, medicines, devices, therapeutic delivery and eHealth systems - Cross-national comparisons on health policy using evidence-based approaches - National studies on health policy to determine the outcomes of technology-driven initiatives - Cross-border eHealth including health tourism - The digital divide in mobility, access and affordability of healthcare - Health technology assessment (HTA) methods and tools for evaluating the effectiveness of clinical and non-clinical health technologies - Health and eHealth indicators and benchmarks (measure/metrics) for understanding the adoption and diffusion of health technologies - Health and eHealth models and frameworks to support policy-makers and other stakeholders in decision-making - Stakeholder engagement with health technologies (clinical and patient/citizen buy-in) - Regulation and health economics
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