Acceptability of a personally controlled health record in a community-based setting: implications for policy and design.
Acceptability of a personally controlled health record in a community-based setting: implications for policy and design.
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DOI：
10.2196/jmir.1187
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发表时间：
2009-04-29
影响因子：
7.4
通讯作者：
Mandl KD
中科院分区：
文献类型：
--
作者：
Weitzman ER;Kaci L;Mandl KD
需要建立以消费者为中心的卫生信息系统，以解决与零散的健康记录以及与病人脱节和失去权力有关的问题，支持公共卫生监测和研究的信息系统也是如此。个人控制的健康记录（PCHR）是对这些需求的一种回应。PCHR是一类特殊的个人健康记录（PHR），其区别在于用户控制记录访问和内容的程度。最近推出的PCHR平台包括Google Health、微软的HealthVault和基于Indivo的Dossia平台。了解PCHR在社区环境中的可接受性、早期影响、政策和设计要求。在PCHR演示的形成性评价中，收集并分析了与个人控制健康记录的可接受性、采用和使用相关的观察和叙述数据。受试者是美国东北部一所城市大学管理的医疗机构的附属机构。数据收集使用焦点小组，半结构化的个人访谈，和电子邮件通信的内容审查。受试者包括：n = 20名管理员、临床医生和机构利益相关者参与了部署前小组或个人访谈; n = 52名社区成员参与了可用性测试和/或部署前试点; n = 250名受试者参与了完整演示，其中n = 81名受试者发起了电子邮件通信，以解决问题或提供反馈。所有数据均采用叙述性文本格式，并由两名独立分析员使用先验定义的主要代码的共享标题进行主题编码。分析人员采用迭代归纳法确定了分主题。在研究活动（即焦点小组、可用性测试、电子邮件内容审查）内部和跨研究活动对主题进行审查，并进行三角测量以确定模式。与PCHR的熟悉程度低，被认为是新生系统的能力的高期望。PCHR的感知价值最高的是与提供者共同定位，查看，更新和共享健康信息的能力。对参与研究的机会的期望最低。早期采用者认为，PCHR的好处超过了感知的风险，包括那些与无意或有意的信息披露。在机构，人际和个人层面的障碍和促进因素进行了确定。PCHR中嵌入式搜索、链接和消息传递功能的偏好，对系统内定制通信的高期望，以及对自我报告和临床数据之间联系的期望，证明了对动态平台模型PCHR的认可。 对PCHR的认识/准备程度低和期望高是一个潜在的问题配对。对非专业用户和提供者的教育和技术援助对于应对与以下方面有关的挑战至关重要：获得PCHR，特别是在老年人中;工作流程要求和提供者对变革的抵制;健康和技术知识不足;澄清确保分布式数据系统中健康信息准确性和完整性的界限和责任;以及理解保密性和隐私风险。继续展示和评估PCHR对于促进其使用至关重要。
Consumer-centered health information systems that address problems related to fragmented health records and disengaged and disempowered patients are needed, as are information systems that support public health monitoring and research. Personally controlled health records (PCHRs) represent one response to these needs. PCHRs are a special class of personal health records (PHRs) distinguished by the extent to which users control record access and contents. Recently launched PCHR platforms include Google Health, Microsoft’s HealthVault, and the Dossia platform, based on Indivo. To understand the acceptability, early impacts, policy, and design requirements of PCHRs in a community-based setting. Observational and narrative data relating to acceptability, adoption, and use of a personally controlled health record were collected and analyzed within a formative evaluation of a PCHR demonstration. Subjects were affiliates of a managed care organization run by an urban university in the northeastern United States. Data were collected using focus groups, semi-structured individual interviews, and content review of email communications. Subjects included: n = 20 administrators, clinicians, and institutional stakeholders who participated in pre-deployment group or individual interviews; n = 52 community members who participated in usability testing and/or pre-deployment piloting; and n = 250 subjects who participated in the full demonstration of which n = 81 initiated email communications to troubleshoot problems or provide feedback. All data were formatted as narrative text and coded thematically by two independent analysts using a shared rubric of a priori defined major codes. Sub-themes were identified by analysts using an iterative inductive process. Themes were reviewed within and across research activities (ie, focus group, usability testing, email content review) and triangulated to identify patterns. Low levels of familiarity with PCHRs were found as were high expectations for capabilities of nascent systems. Perceived value for PCHRs was highest around abilities to co-locate, view, update, and share health information with providers. Expectations were lowest for opportunities to participate in research. Early adopters perceived that PCHR benefits outweighed perceived risks, including those related to inadvertent or intentional information disclosure. Barriers and facilitators at institutional, interpersonal, and individual levels were identified. Endorsement of a dynamic platform model PCHR was evidenced by preferences for embedded searching, linking, and messaging capabilities in PCHRs; by high expectations for within-system tailored communications; and by expectation of linkages between self-report and clinical data. Low levels of awareness/preparedness and high expectations for PCHRs exist as a potentially problematic pairing. Educational and technical assistance for lay users and providers are critical to meet challenges related to: access to PCHRs, especially among older cohorts; workflow demands and resistance to change among providers; inadequate health and technology literacy; clarification of boundaries and responsibility for ensuring accuracy and integrity of health information across distributed data systems; and understanding confidentiality and privacy risks. Continued demonstration and evaluation of PCHRs is essential to advancing their use.
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DOI：
10.1197/jamia.m2865
发表时间：
2008-11-01
影响因子：
6.4
作者：
Bourgeois, Fabienne C.;Taylor, Patrick L.;Mandi, Kenneth D.
通讯作者：
Mandi, Kenneth D.
影响因子：
254.7
作者：
Davis, TC;Williams, MV;Glass, J
通讯作者：
Glass, J
DOI：
10.1197/jamia.m2562
发表时间：
2008-01-01
影响因子：
6.4
作者：
Halamka, John D.;Mandl, Kenneth D.;Tang, Paul C.
通讯作者：
Tang, Paul C.
影响因子：
--
作者：
D'Allesandro, DM;Dosa, NP
通讯作者：
Dosa, NP
影响因子：
3
作者：
Miller, Edward Alan;West, Darrell M.
通讯作者：
West, Darrell M.