Willingness to share personal health record data for care improvement and public health: a survey of experienced personal health record users.
Willingness to share personal health record data for care improvement and public health: a survey of experienced personal health record users.
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DOI：
10.1186/1472-6947-12-39
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发表时间：
2012-05-22
影响因子：
3.5
通讯作者：
Mandl KD
中科院分区：
文献类型：
--
作者：
Weitzman ER;Kelemen S;Kaci L;Mandl KD
个人控制的健康记录（PCHR）中存储的数据可能对临床医生和公共卫生实体有价值，如果患者及其家人愿意分享它们。我们试图描述消费者愿意和不愿意（沉默）在健康主题中分享PCHR数据，并与不同的利益相关者，以促进对这个问题的理解。2009年对18岁以上患者或患者父母的重复PCHR用户进行的横断面网络调查，以评估与院外提供者分享其PCHR数据以支持护理的意愿，以及与州/地方公共卫生当局分享PCHR数据以支持监测的意愿;使用重复测量方法估计了分享关于10个典型健康主题的PCHR信息的沉默率。在261名受访者（回复率56%）中，更多人表示他们会与州/地方公共卫生当局（63.3%）分享所有信息，而不是与院外提供者（54.1%）（OR 1.5，95%CI 1.1，1.9; p = 0.005）;很少有人会与这些方分享任何信息（分别为7.9%和5.2%）。对于公共卫生共享，与传染病相比，大多数主题的沉默率更高（OR为4.9至1.4，所有p值< .05），并反映了对匿名（47.2%），政府不敏感（41.5%），歧视（24%）的担忧。对于提供者共享，与传染性疾病相比，所有主题的沉默都更高（OR 6.3至1.5，所有p值< .05），并反映了对相关性（52%），向保险披露（47.6%）和/或家庭（20.5%）的关注。儿科患者及其家人通常愿意分享电子健康信息以支持健康改善，但仍保持谨慎。需要用于PCHR共享的鲁棒信任模型。
Data stored in personally controlled health records (PCHRs) may hold value for clinicians and public health entities, if patients and their families will share them. We sought to characterize consumer willingness and unwillingness (reticence) to share PCHR data across health topics, and with different stakeholders, to advance understanding of this issue. Cross-sectional 2009 Web survey of repeat PCHR users who were patients over 18 years old or parents of patients, to assess willingness to share their PCHR data with an-out-of-hospital provider to support care, and the state/local public health authority to support monitoring; the odds of reticence to share PCHR information about ten exemplary health topics were estimated using a repeated measures approach. Of 261 respondents (56% response rate), more reported they would share all information with the state/local public health authority (63.3%) than with an out-of-hospital provider (54.1%) (OR 1.5, 95% CI 1.1, 1.9; p = .005); few would not share any information with these parties (respectively, 7.9% and 5.2%). For public health sharing, reticence was higher for most topics compared to contagious illness (ORs 4.9 to 1.4, all p-values < .05), and reflected concern about anonymity (47.2%), government insensitivity (41.5%), discrimination (24%). For provider sharing, reticence was higher for all topics compared to contagious illness (ORs 6.3 to 1.5, all p-values < .05), and reflected concern for relevance (52%), disclosure to insurance (47.6%) and/or family (20.5%). Pediatric patients and their families are often willing to share electronic health information to support health improvement, but remain cautious. Robust trust models for PCHR sharing are needed.
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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：
2.8
作者：
Boonstra A;Broekhuis M
通讯作者：
Broekhuis M
影响因子：
105.7
作者：
Mandl, KD;Szolovits, P;Kohane, IS
通讯作者：
Kohane, IS
影响因子：
3.1
作者：
Lichtenstein, B;Bachmann, LH
通讯作者：
Bachmann, LH
影响因子：
4.1
作者：
Baird, W.;Jackson, R.;Zajicek, J.
通讯作者：
Zajicek, J.