Weill Cornell Medical College, Center for Healthcare Informatics and Policy, New York, New York, USA Health Information Technology Evaluation Collaborative (HITEC), New York, New York, USA.
Department of Health and Human Services, Office of the National Coordinator for Health Information Technology, Washington, DC, USA.
J Am Med Inform Assoc. 2014 Jul-Aug;21(4):664-70. doi: 10.1136/amiajnl-2013-002073. Epub 2013 Sep 24.
Providing patients with access to their medical data is widely expected to help educate and empower them to manage their own health. Health information exchange (HIE) infrastructures could potentially help patients access records across multiple healthcare providers. We studied three HIE organizations as they developed portals to give consumers access to HIE data previously exchanged only among healthcare organizations.
To follow the development of new consumer portal technologies, and to identify barriers and facilitators to patient access to HIE data.
Semistructured interviews of 15 key informants over a 2-year period spanning the development and early implementation of three new projects, coded according to a sociotechnical framework.
As the organizations tried to develop functionality that fully served the needs of both providers and patients, plans were altered by technical barriers (primarily related to data standardization) and cultural and legal issues surrounding data access. Organizational changes also played an important role in altering project plans. In all three cases, patient access to data was significantly scaled back from initial plans.
This prospective study revealed how sociotechnical factors previously identified as important in health information technology success and failure helped to shape the evolution of three novel consumer informatics projects. Barriers to providing patients with seamless access to their HIE data were multifactorial. Remedies will have to address technical, organizational, cultural, and other factors.
让患者获得自己的医疗数据，被广泛认为有助于教育和增强他们管理自己健康的能力。健康信息交换 (HIE) 基础设施有可能帮助患者访问多个医疗服务提供者的记录。我们研究了三个 HIE 组织，因为它们正在开发门户，以便消费者可以访问之前仅在医疗保健组织之间交换的 HIE 数据。
跟踪新的消费者门户技术的发展，并确定患者访问 HIE 数据的障碍和促进因素。
对 15 名关键信息提供者进行了为期 2 年的半结构化访谈，跨越了三个新项目的开发和早期实施，根据社会技术框架进行了编码。
随着组织试图开发既能充分满足提供者又能满足患者需求的功能，技术障碍（主要与数据标准化有关）以及围绕数据访问的文化和法律问题改变了计划。组织变革也在改变项目计划方面发挥了重要作用。在所有三种情况下，患者对数据的访问都大大缩减了最初的计划。
这项前瞻性研究揭示了以前被确定为健康信息技术成功和失败的重要因素的社会技术因素如何帮助塑造了三个新的消费者信息学项目的演变。为患者提供无缝访问其 HIE 数据的障碍是多方面的。补救措施必须解决技术、组织、文化和其他因素。
