Tierney William M, Alpert Sheri A, Byrket Amy, Caine Kelly, Leventhal Jeremy C, Meslin Eric M, Schwartz Peter H
Regenstrief Institute, Inc, 410 West Tenth Street, Suite HS2000, Indianapolis, IN, 46202, USA,
J Gen Intern Med. 2015 Jan;30 Suppl 1(Suppl 1):S31-7. doi: 10.1007/s11606-014-3053-0.
Applying Fair Information Practice principles to electronic health records (EHRs) requires allowing patient control over who views their data.
We designed a program that captures patients' preferences for provider access to an urban health system's EHR. Patients could allow or restrict providers' access to all data (diagnoses, medications, test results, reports, etc.) or only highly sensitive data (sexually transmitted infections, HIV/AIDS, drugs/alcohol, mental or reproductive health). Except for information in free-text reports, we redacted EHR data shown to providers according to patients' preferences. Providers could "break the glass" to display redacted information. We prospectively studied this system in one primary care clinic, noting redactions and when users "broke the glass," and surveyed providers about their experiences and opinions.
Eight of nine eligible clinic physicians and all 23 clinic staff participated. All 105 patients who enrolled completed the preference program. Providers did not know which of their patients were enrolled, nor their preferences for accessing their EHRs. During the 6-month prospective study, 92 study patients (88 %) returned 261 times, during which providers viewed their EHRs 126 times (48 %). Providers "broke the glass" 102 times, 92 times for patients not in the study and ten times for six returning study patients, all of whom had restricted EHR access. Providers "broke the glass" for six (14 %) of 43 returning study patients with redacted data vs. zero among 49 study patients without redactions (p = 0.01). Although 54 % of providers agreed that patients should have control over who sees their EHR information, 58 % believed restricting EHR access could harm provider-patient relationships and 71 % felt quality of care would suffer.
Patients frequently preferred restricting provider access to their EHRs. Providers infrequently overrode patients' preferences to view hidden data. Providers believed that restricting EHR access would adversely impact patient care. Applying Fair Information Practice principles to EHRs will require balancing patient preferences, providers' needs, and health care quality.
将公平信息实践原则应用于电子健康记录(EHR)需要允许患者控制谁可以查看他们的数据。
我们设计了一个程序,用于获取患者对于医疗机构访问城市医疗系统电子健康记录的偏好。患者可以允许或限制医疗机构访问所有数据(诊断结果、用药情况、检查结果、报告等)或仅高度敏感数据(性传播感染、艾滋病毒/艾滋病、毒品/酒精、精神或生殖健康)。除了自由文本报告中的信息外,我们根据患者的偏好对向医疗机构展示的电子健康记录数据进行了编辑。医疗机构可以“打破限制”以显示编辑后的数据。我们在一家初级保健诊所对该系统进行了前瞻性研究,记录编辑情况以及用户何时“打破限制”,并就他们的经历和意见对医疗机构人员进行了调查。
九名符合条件的诊所医生中有八名以及所有23名诊所工作人员参与了研究。所有105名登记的患者都完成了偏好设置程序。医疗机构人员不知道哪些患者登记了,也不知道他们访问电子健康记录的偏好。在为期6个月的前瞻性研究中,92名研究患者(88%)回访了261次,在此期间医疗机构人员查看他们的电子健康记录126次(48%)。医疗机构人员“打破限制”102次,其中92次是针对未参与研究的患者,10次是针对六名回访的研究患者,这些患者均限制了对电子健康记录的访问。在43名回访的有编辑数据的研究患者中,有六名(14%)的记录被“打破限制”,而在49名无编辑记录的研究患者中这一比例为零(p = 0.01)。尽管54%的医疗机构人员同意患者应该控制谁可以查看他们的电子健康记录信息,但58%的人认为限制对电子健康记录的访问可能会损害医患关系,71%的人认为医疗质量会受到影响。
患者通常更倾向于限制医疗机构访问他们的电子健康记录。医疗机构人员很少违背患者的偏好去查看隐藏数据。医疗机构人员认为限制对电子健康记录的访问会对患者护理产生不利影响。将公平信息实践原则应用于电子健康记录需要平衡患者偏好、医疗机构人员需求和医疗质量。