Participatory eHealth and Health Data Research Group, Department of Women's and Children's Health, Uppsala University, Uppsala, Sweden.
MedTech Science & Innovation Centre, Uppsala University Hospital, Uppsala, Sweden.
J Med Internet Res. 2023 Nov 3;25:e47841. doi: 10.2196/47841.
Previous research reports that patients with mental health conditions experience benefits, for example, increased empowerment and validation, from reading their patient-accessible electronic health records (PAEHRs). In mental health care (MHC), PAEHRs remain controversial, as health care professionals are concerned that patients may feel worried or offended by the content of the notes. Moreover, existing research has focused on specific mental health diagnoses, excluding the larger PAEHR userbase with experience in MHC.
The objective of this study is to establish if and how the experiences of patients with and those without MHC differ in using their PAEHRs by (1) comparing patient characteristics and differences in using the national patient portal between the 2 groups and (2) establishing group differences in the prevalence of negative experiences, for example, rates of errors, omissions, and offenses between the 2 groups.
Our analysis was performed on data from an online patient survey distributed through the Swedish national patient portal as part of our international research project, NORDeHEALTH. The respondents were patient users of the national patient portal 1177, aged 15 years or older, and categorized either as those with MHC experience or with any other health care experience (nonmental health care [non-MHC]). Patient characteristics such as gender, age, education, employment, and health status were gathered. Portal use characteristics included frequency of access, encouragement to read the record, and instances of positive and negative experiences. Negative experiences were further explored through rates of error, omission, and offense. The data were summarized through descriptive statistics. Group differences were analyzed through Pearson chi-square.
Of the total sample (N=12,334), MHC respondents (n=3131) experienced errors (1586/3131, 50.65%, and non-MHC 3311/9203, 35.98%), omissions (1089/3131, 34.78%, and non-MHC 2427/9203, 26.37%) and offenses (1183/3131, 37.78%, and non-MHC 1616/9203, 17.56%) in the electronic health record at a higher rate than non-MHC respondents (n=9203). Respondents reported that the identified error (MHC 795/3131, 50.13%, and non-MHC 1366/9203, 41.26%) and omission (MHC 622/3131, 57.12%, and non-MHC 1329/9203, 54.76%) were "very important," but most did nothing to correct them (MHC 792/3131, 41.29%, and non-MHC 1838/9203, 42.17%). Most of the respondents identified as women in both groups.
About 1 in 2 MHC patients identified an error in the record, and about 1 in 3 identified an omission, both at a much higher rate than in the non-MHC group. Patients with MHC also felt offended by the content of the notes more commonly (1 in 3 vs 1 in 6). These findings validate some of the worries expressed by health care professionals about providing patients with MHC with PAEHRs and highlight challenges with the documentation quality in the records.
先前的研究报告表明,心理健康状况的患者从阅读他们可访问的电子健康记录(PAEHRs)中获得了益处,例如增强了授权和验证。在精神健康护理(MHC)中,PAEHRs 仍然存在争议,因为医疗保健专业人员担心患者可能会对记录中的内容感到担忧或冒犯。此外,现有研究侧重于特定的心理健康诊断,排除了在 MHC 中有经验的更大的 PAEHR 用户群体。
本研究旨在通过(1)比较两组患者的特征和使用国家患者门户的差异,以及(2)确定两组患者在负面体验(例如,错误、遗漏和冒犯的发生率)方面的发生率差异,确定使用 PAEHR 的患者和没有 MHC 经验的患者的体验是否存在差异。
我们的分析基于通过瑞典国家患者门户在线患者调查的数据,该调查是我们国际研究项目 NORDeHEALTH 的一部分。受访者是年龄在 15 岁或以上的国家患者门户 1177 的患者用户,并分为有 MHC 经验或有任何其他医疗保健经验(非 MHC)的患者。收集了患者特征,如性别、年龄、教育、就业和健康状况。门户使用特征包括访问频率、鼓励阅读记录以及积极和负面体验的实例。通过错误、遗漏和冒犯的发生率进一步探讨了负面体验。数据通过描述性统计进行总结。通过 Pearson chi-square 分析组间差异。
在总样本(N=12334)中,MHC 受访者(n=3131)在电子健康记录中出现错误(1586/3131,50.65%,而非 MHC 受访者为 3311/9203,35.98%)、遗漏(1089/3131,34.78%,而非 MHC 受访者为 2427/9203,26.37%)和冒犯(1183/3131,37.78%,而非 MHC 受访者为 1616/9203,17.56%)的发生率高于非 MHC 受访者(n=9203)。受访者报告说,识别出的错误(MHC 795/3131,50.13%,而非 MHC 1366/9203,41.26%)和遗漏(MHC 622/3131,57.12%,而非 MHC 1329/9203,54.76%)“非常重要”,但大多数人没有采取任何措施来纠正它们(MHC 792/3131,41.29%,而非 MHC 1838/9203,42.17%)。两组中大多数受访者都是女性。
大约 1/2 的 MHC 患者在记录中发现了错误,大约 1/3 的患者发现了遗漏,这两种情况的发生率都远高于非 MHC 组。MHC 患者也更常因记录内容而感到冒犯(1/3 对 1/6)。这些发现证实了医疗保健专业人员对向 MHC 患者提供 PAEHRs 的一些担忧,并强调了记录质量方面的挑战。