Sharing medical data for health research: the early personal health record experience.
Sharing medical data for health research: the early personal health record experience.
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DOI：
10.2196/jmir.1356
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发表时间：
2010-05-25
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
让消费者参与共享来自个人控制健康记录（PCHR）的信息进行健康研究，可以促进改善护理和促进公共健康的目标，与联邦经济和临床健康健康信息技术（HITECH）法案保持一致。了解消费者共享数据的意愿对于推进这一模式至关重要。我们的目标是表征消费者愿意分享PCHR数据的健康研究和条件和上下文轴承愿意分享。采用了一种混合方法，将调查和叙述数据相结合。调查数据收集的态度分享PCHR信息的健康研究，从早期采用者（n = 151）的生活PCHR人口与医疗记录和自我报告的行为和社会数据。使用描述性统计和逻辑回归分析数据，以表征意愿，共享条件和社会人口因素的变化。叙事数据收集通过半结构化的焦点小组和一对一的访谈与一个单独的样本的社区成员（n = 30）暴露后，PCHR示威。两名独立的分析师使用先验定义代码和迭代归纳过程的共享标题对主要和次要主题的叙述性数据进行编码。调查结果与调查结果进行了三角分析，以确定模式。在PHCR用户中，151人中有138人（91%）愿意为健康研究共享医疗信息，89人（59%）倾向于选择共享模式。分享意愿的条件是匿名，研究用途，与可信中介的合作，PCHR访问和使用的透明度以及支付。消费者确定的对内容和共享时间的限制可能是共享的先决条件。在不同的社会群体中，观察到在不同条件下支持分享的选择差异。没有观察到性别差异，但发现年龄，角色和自测健康的差异。例如，学生比非学生更倾向于选择退出共享默认值（未校正的比值比[OR] = 2.89，95%置信区间[CI] 1.10 - 7.62，P = 0.03）。50岁以上的参与者比年轻参与者更不可能报告支付会增加分享意愿（未调整OR = 0.94，95%CI 0.91 - 0.96，P < .001）。学生比非学生更有可能报告支付会增加他们分享的意愿（未调整OR 9.62，95%CI 3.44 - 26.87，P <0.001）。经历突发公共卫生事件可能会增加分享的意愿，特别是在50岁以上的人群中（未校正OR 1.03，95% CI 1.01 - 1.05，P = .02）;然而，学生比非学生更不可能报告这种态度（未校正OR 0.13，95% CI 0.05 - 0.36，P < .001）。最后，自我评估健康状况一般或较差的受试者比自我评估健康状况良好或极佳的受试者更不可能报告在公共卫生紧急事件期间分享意愿会增加（未调整OR 0.61，95% CI 0.38 - 0.97，P = 0.04）。早期采用者和焦点小组参与者强烈支持分享PCHR信息用于健康研究，不同条件和背景下的社会群体的支持各不相同。允许用户选择他们喜欢的共享条件可能对支持共享和促进信任至关重要，安全监测机制的发展也是如此。
Engaging consumers in sharing information from personally controlled health records (PCHRs) for health research may promote goals of improving care and advancing public health consistent with the federal Health Information Technology for Economic and Clinical Health (HITECH) Act. Understanding consumer willingness to share data is critical to advancing this model. The objective was to characterize consumer willingness to share PCHR data for health research and the conditions and contexts bearing on willingness to share. A mixed method approach integrating survey and narrative data was used. Survey data were collected about attitudes toward sharing PCHR information for health research from early adopters (n = 151) of a live PCHR populated with medical records and self-reported behavioral and social data. Data were analyzed using descriptive statistics and logistic regression to characterize willingness, conditions for sharing, and variations by sociodemographic factors. Narrative data were collected through semistructured focus group and one-on-one interviews with a separate sample of community members (n = 30) following exposure to PCHR demonstrations. Two independent analysts coded narrative data for major and minor themes using a shared rubric of a priori defined codes and an iterative inductive process. Findings were triangulated with survey results to identify patterns. Of PHCR users, 138 out of 151 (91%) were willing to share medical information for health research with 89 (59%) favoring an opt-in sharing model. Willingness to share was conditioned by anonymity, research use, engagement with a trusted intermediary, transparency around PCHR access and use, and payment. Consumer-determined restrictions on content and timing of sharing may be prerequisites to sharing. Select differences in support for sharing under different conditions were observed across social groups. No gender differences were observed; however differences in age, role, and self-rated health were found. For example, students were more likely than nonstudents to favor an opt-out sharing default (unadjusted odds ratio [OR] = 2.89, 95% confidence interval [CI] 1.10 - 7.62, P = .03). Participants over age 50 were less likely than younger participants to report that payment would increase willingness to share (unadjusted OR = 0.94, 95% CI 0.91 - 0.96, P < .001). Students were more likely than nonstudents to report that payment would increase their willingness to share (unadjusted OR 9.62, 95% CI 3.44 - 26.87, P < .001). Experiencing a public health emergency may increase willingness to share especially among persons over 50 (unadjusted OR 1.03, 95% CI 1.01 - 1.05, P = .02); however, students were less likely than non-students to report this attitude (unadjusted OR 0.13, 95% CI 0.05 - 0.36, P < .001). Finally, subjects with fair or poor self-rated health were less likely than those with good to excellent self-rated health to report that willingness to share would increase during a public health emergency (unadjusted OR 0.61, 95% CI 0.38 - 0.97, P = .04). Strong support for sharing of PCHR information for health research existed among early adopters and focus group participants, with support varying by social group under different conditions and contexts. Allowing users to select their preferred conditions for sharing may be vital to supporting sharing and fostering trust as may be development of safety monitoring mechanisms.
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影响因子：
2.7
作者：
Willison DJ;Swinton M;Schwartz L;Abelson J;Charles C;Northrup D;Cheng J;Thabane L
通讯作者：
Thabane L
影响因子：
4.1
作者：
Baird, W.;Jackson, R.;Zajicek, J.
通讯作者：
Zajicek, J.
影响因子：
3.7
作者：
Harkonmaki, Karoliina;Silventoinen, Karri;Levalahti, Esko;Pitkaniemi, Janne;Huunan-Seppala, Antti;Klaukka, Timo;Koskenvuo, Markku;Kaprio, Jaakko
通讯作者：
Kaprio, Jaakko
影响因子：
4.5
作者：
van Teijlingen, Edwin R.;Douglas, Flora;Torrance, Nicola
通讯作者：
Torrance, Nicola
影响因子：
7.4
作者：
Weitzman ER;Kaci L;Mandl KD
通讯作者：
Mandl KD