尽管近年来对患者访问自己的健康记录进行了许多调查，但有关患者观点和偏好的全国性跨国数据数量有限。为了解决这一差距，北欧电子健康项目 NORDeHEALTH 对患者用户进行了一项国际调查。我们旨在调查通过挪威、瑞典、瑞典等国的国家患者门户访问电子健康记录 (EHR) 的患者的社会人口特征和经历。芬兰和爱沙尼亚。利用国家在线健康门户网站分发了一项基于网络的横断面调查。目标参与者是 2022 年初访问国家患者门户且年龄≥15 岁的患者。该调查包括一系列封闭式和自由文本问题，涉及参与者的社会人口统计、可用性体验、医疗保健和电子病历的经验、在线阅读健康记录的原因、错误、遗漏和冒犯的经验、有关安全和隐私的意见、以及门户网站功能的实用性。在本文中，我们通过描述性统计总结了参与者人口统计数据、过去的医疗保健经验以及患者门户的数据。总共有 29,334 名用户完成了调查，其中 9503 名（32.40%）来自挪威，13,008 名（44.35%）来自挪威。 ）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，全国样本具有可比性，其中约三分之二为女性（19,904/29,302，67.93%）。各国的年龄分布相似，但芬兰有老年用户，而爱沙尼亚有年轻用户。全国样本中受教育程度最高和接受医疗保健教育的情况各不相同。在所有 4 个国家中，患者最常将自己的健康状况评为“一般”（11,279/29,302，38.48%）。在爱沙尼亚，参与者更倾向于对自己的健康状况做出正面评价，而挪威和瑞典的负面健康评价比例最高。在整个样本中，大多数患者在过去 2 年中接受过一些护理（25,318/29,254，86.55%）。心理健康护理（6214/29,254，21.24%）比肿瘤护理（3664/29,254，12.52%）更常见。总体而言，大多数患者访问其健康记录“2 至 9 次”（11,546/29,306，39.4%），最频繁的用户居住在瑞典，大约三分之一的患者访问该记录“超过 20 次”（4571 /13,008, 35.14%）。这是第一项比较患者用户的社会人口统计特征和访问电子病历的体验的大规模国际调查。尽管这些国家地理位置相近，并且在为居民提供在线记录访问方面表现出类似的进步，但本次调查中的患者用户却有所不同。我们将通过对 NORDeHEALTH 2022 年患者调查的国家和综合数据集进行集中分析，继续调查患者对国家患者可访问的 EHR 的体验和意见。©Maria Hägglund、Anna Kharko、Josefin Hagström、Annika Bärkås、Charlotte Blease、Åsa卡尚德、凯瑟琳·德罗什、阿斯比约恩·约翰森·法格伦德、芭芭拉·哈格、伊斯托·胡维拉、艾里斯·霍哈默、布里奇特·凯恩、古纳尔·奥·克莱因、伊莱·克里斯蒂安森、克利·卢克斯、乔纳斯·莫尔、艾琳·穆里、艾琳·霍夫斯塔德·拉普格、哈尼夫·雷泽皮、萨拉·里加尔、皮特·罗斯,伊莎贝拉·斯坎杜拉、Saija Simola、Hedvig Soone、Bo Wang、Maedeh Ghorbanian Zolbin、Rose-Mharie Åhlfeldt、Sari Kujala、Monika Alise Johansen。最初发表于《医学互联网研究杂志》(https://www.jmir.org)，2023 年 11 月 13 日。

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.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.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.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%).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.©Maria Hägglund, Anna Kharko, Josefin Hagström, Annika Bärkås, Charlotte Blease, Åsa Cajander, Catherine DesRoches, Asbjørn Johansen Fagerlund, Barbara Haage, Isto Huvila, Iiris Hörhammer, Bridget Kane, Gunnar O Klein, Eli Kristiansen, Kerli Luks, Jonas Moll, Irene Muli, Eline Hovstad Raphaug, Hanife Rexhepi, Sara Riggare, Peeter Ross, Isabella Scandurra, Saija Simola, Hedvig Soone, Bo Wang, Maedeh Ghorbanian Zolbin, Rose-Mharie Åhlfeldt, Sari Kujala, Monika Alise Johansen. Originally published in the Journal of Medical Internet Research (https://www.jmir.org), 13.11.2023.