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 13;25:e47573. doi: 10.2196/47573.
BACKGROUND: Although many surveys have been conducted on patients accessing their own health records in recent years, there is a limited amount of nationwide cross-country data available on patients' views and preferences. To address this gap, an international survey of patient users was conducted in the Nordic eHealth project, NORDeHEALTH. OBJECTIVE: We aimed to investigate the sociodemographic characteristics and experiences of patients who accessed their electronic health records (EHRs) through national patient portals in Norway, Sweden, Finland, and Estonia. METHODS: A cross-sectional web-based survey was distributed using the national online health portals. The target participants were patients who accessed the national patient portals at the start of 2022 and who were aged ≥15 years. The survey included a mixture of close-ended and free-text questions about participant sociodemographics, usability experience, experiences with health care and the EHR, reasons for reading health records online, experience with errors, omissions and offense, opinions about security and privacy, and the usefulness of portal functions. In this paper, we summarized the data on participant demographics, past experience with health care, and the patient portal through descriptive statistics. RESULTS: In total, 29,334 users completed the survey, of which 9503 (32.40%) were from Norway, 13,008 (44.35%) from Sweden, 4713 (16.07%) from Finland, and 2104 (7.17%) from Estonia. National samples were comparable according to reported gender, with about two-thirds identifying as women (19,904/29,302, 67.93%). Age distributions were similar across the countries, but Finland had older users while Estonia had younger users. The highest attained education and presence of health care education varied among the national samples. In all 4 countries, patients most commonly rated their health as "fair" (11,279/29,302, 38.48%). In Estonia, participants were more often inclined to rate their health positively, whereas Norway and Sweden had the highest proportion of negative health ratings. Across the whole sample, most patients received some care in the last 2 years (25,318/29,254, 86.55%). Mental health care was more common (6214/29,254, 21.24%) than oncological care (3664/29,254, 12.52%). Overall, most patients had accessed their health record "2 to 9 times" (11,546/29,306, 39.4%), with the most frequent users residing in Sweden, where about one-third of patients accessed it "more than 20 times" (4571/13,008, 35.14%). CONCLUSIONS: This is the first large-scale international survey to compare patient users' sociodemographics and experiences with accessing their EHRs. Although the countries are in close geographic proximity and demonstrate similar advancements in giving their residents online records access, patient users in this survey differed. We will continue to investigate patients' experiences and opinions about national patient-accessible EHRs through focused analyses of the national and combined data sets from the NORDeHEALTH 2022 Patient Survey.
背景:近年来,尽管已经针对患者访问自己健康记录的情况进行了多项调查,但关于患者的看法和偏好,可获得的全国性跨国数据有限。为了弥补这一空白,在北欧电子健康项目 NORDeHEALTH 中,对患者用户进行了一项国际调查。
目的:旨在调查通过挪威、瑞典、芬兰和爱沙尼亚的国家患者门户访问电子健康记录 (EHR) 的患者的社会人口统计学特征和体验。
方法:通过国家在线健康门户使用横断面网络调查进行分发。目标参与者为 2022 年初开始使用国家患者门户且年龄≥15 岁的患者。调查包括关于参与者人口统计学、可用性体验、医疗保健和 EHR 体验、在线阅读健康记录的原因、错误、遗漏和冒犯体验、对安全性和隐私的看法以及门户功能有用性的混合封闭式和自由文本问题。在本文中,我们通过描述性统计总结了关于参与者人口统计学、过去医疗保健经验和患者门户的数据。
结果:共有 29334 名用户完成了调查,其中 9503 名(32.40%)来自挪威,13008 名(44.35%)来自瑞典,4713 名(16.07%)来自芬兰,2104 名(7.17%)来自爱沙尼亚。根据报告的性别,国家样本具有可比性,约三分之二的人认为自己是女性(19904/29302,67.93%)。各国的年龄分布相似,但芬兰的用户年龄较大,而爱沙尼亚的用户年龄较小。最高学历和医疗保健教育的存在在各国样本之间存在差异。在所有 4 个国家中,患者最常将自己的健康状况评为“一般”(11279/29302,38.48%)。在爱沙尼亚,参与者更倾向于对自己的健康状况给予积极评价,而挪威和瑞典则有更高比例的负面健康评价。在整个样本中,大多数患者在过去 2 年中接受过某种治疗(25318/29254,86.55%)。精神保健更常见(6214/29254,21.24%),而肿瘤治疗较少(3664/29254,12.52%)。总体而言,大多数患者“访问 2 到 9 次”(11546/29306,39.4%),最频繁的用户居住在瑞典,其中约三分之一的患者“访问次数超过 20 次”(4571/13008,35.14%)。
结论:这是第一项比较患者访问电子健康记录的社会人口统计学特征和体验的大型国际调查。尽管这些国家地理位置相近,在赋予居民在线记录访问权方面也表现出相似的进步,但参与这项调查的患者却存在差异。我们将继续通过对 NORDeHEALTH 2022 年患者调查的国家和综合数据集进行重点分析,调查患者对国家可访问电子健康记录的体验和看法。
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