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关于电子健康的公民权利与承诺宪章提案的制定与验证

Development and validation of a proposal for a Charter of Citizens' Rights and Commitments regarding eHealth.

作者信息

Campaña-Castillo Fernando, Paloma-Castro Olga, Romero-Sánchez José Manuel

机构信息

Facultat de Medicina i Ciències de la Salut, Departament d'Infermeria Fonamental i Clínica, Universidad de Barcelona, Barcelona, Spain; Hospital Sant Rafael de Barcelona HHSCJ, Barcelona, Spain.

Facultad de Enfermería y Fisioterapia, Departamento de Enfermería y Fisioterapia, Universidad de Cádiz, Cadiz, Spain.

出版信息

Enferm Clin (Engl Ed). 2024 Nov-Dec;34(6):478-492. doi: 10.1016/j.enfcle.2024.11.008. Epub 2024 Nov 14.

DOI:10.1016/j.enfcle.2024.11.008
PMID:39550065
Abstract

BACKGROUND

There is a new technological paradigm in health care which has been reinforced following the outbreak of the Covid-19 pandemic. Technological innovations create both challenges and opportunities to which citizens, healthcare professionals, and healthcare organisations must adapt to this reality. Although most health services have charters of citizens' general rights and commitments, there is no specific charter concerning eHealth.

OBJECTIVES

To develop and validate a proposal of a minimum set of citizens' rights and commitments to e-Health.

METHODS

Experts in a discussion group developed a charter composed of twenty items, ten rights and ten commitments to e-Health. Two rounds of consensus were necessary to obtain a final version of the charter. The twenty items were validated for content and assessed for appropriateness, relevance, and understandability using an internet-based 2-round Delphi approach in which 134 experts, patients and healthcare professionals participated. They rated the assessed attributes for each item on a 5-point Likert scale for consensus. The content validity index was calculated with kappa statistic, a consensus measure of inter-rater agreement.

RESULTS

In the first round, 18 items were validated, leaving only two commitments with unacceptable indices. Both were modified using the experts' contributions and entered a second round of evaluation, after which the indices met the established requirements.

CONCLUSIONS

A proposal for a chart of patient rights and commitments to eHealth was developed and showed adequate content validity and inter-observer reliability. This chart is expected to become a starting point for the debate on the role of technology in the way patients, professionals, and health services interact in the current context.

摘要

背景

新冠疫情爆发后,医疗保健领域出现了一种新的技术范式。技术创新给公民、医疗保健专业人员和医疗保健组织带来了挑战和机遇,他们必须适应这一现实。尽管大多数医疗服务都有公民一般权利和承诺的宪章,但没有关于电子健康的具体宪章。

目的

制定并验证一套关于公民电子健康最低权利和承诺的提案。

方法

一个讨论小组的专家制定了一份宪章,其中包括二十项条款,即十项电子健康权利和十项电子健康承诺。需要两轮共识才能获得宪章的最终版本。这二十项条款通过基于互联网的两轮德尔菲法进行内容验证,并评估其适当性、相关性和可理解性,共有134名专家、患者和医疗保健专业人员参与。他们使用5点李克特量表对每个条款的评估属性进行评分以达成共识。使用kappa统计量计算内容效度指数,kappa统计量是一种评估评分者间一致性的共识度量。

结果

在第一轮中,18项条款得到验证,只有两项承诺的指标不可接受。根据专家的意见对这两项进行了修改,并进入第二轮评估,之后指标符合既定要求。

结论

制定了一份患者电子健康权利和承诺图表的提案,该提案显示出足够的内容效度和观察者间信度。预计该图表将成为当前背景下关于技术在患者、专业人员和医疗服务互动方式中作用的辩论的起点。

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