Elkhaili El Alami Lalla Soundous, Nemoto Asuka, Nakata Yoshinori
Teikyo University Graduate School of Public Health, Tokyo, Japan.
Glob Health Med. 2020 Jun 30;2(3):168-173. doi: 10.35772/ghm.2020.01014.
Allowing patients to access their electronic health records (EHR) online, that we call the patient open- EHR, may help patients better understand and remember their health information, leading to improved health outcomes. In Japan, such solution is not yet widespread, and general patients' expectations for such solution are not known. The OpenNotes initiative in the United States of America (USA) had done various studies concerning the intervention of sharing doctors' notes, which are part of the EHR, with patients. Our study objective is to explore general patients' expectations toward potential benefits and risks of the patient open-EHR solution if given chance to use in Japan. A cross-sectional study was done using an online questionnaire. One hundred and eighty-three general patients without previous experience using the patient open-EHR service, responded to our survey after being recruited through SNS and posters at a university hospital not offering the solution. Comparison with the result of the OpenNotes original study, conducted in a similar setting, was also done. The results showed that participants were, similarly to the OpenNotes results, positive about the system's potential benefits; 90% agreed on the system ability to help them better understand their condition and remember their healthcare plan. On the other hand, they were much concerned about the potential risks especially privacy; 62% agreed they would be worried about their privacy. Adequate measures to provide highly secured systems and to allow patients to be better informed about the use of their personal health records should be taken to comfort future users.
让患者在线访问其电子健康记录（EHR），即我们所说的患者开放式EHR，可能有助于患者更好地理解和记住自己的健康信息，从而改善健康状况。在日本，这种解决方案尚未普及，普通患者对其期望也未知。美国的“开放笔记”倡议开展了多项关于与患者共享作为电子健康记录一部分的医生笔记干预措施的研究。我们的研究目的是探讨日本普通患者如果有机会使用患者开放式EHR解决方案，对其潜在益处和风险的期望。我们通过在线问卷进行了一项横断面研究。183名此前没有使用过患者开放式EHR服务经验的普通患者，在一家未提供该解决方案的大学医院通过社交网络服务（SNS）和海报招募后参与了我们的调查。我们还将结果与在类似环境中进行的“开放笔记”原始研究结果进行了比较。结果显示，与“开放笔记”研究结果类似，参与者对该系统的潜在益处持积极态度；90%的人认同该系统有助于他们更好地了解自己的病情并记住医疗保健计划。另一方面，他们非常担心潜在风险，尤其是隐私问题；62%的人表示会担心自己的隐私。应该采取适当措施提供高度安全的系统，并让患者更好地了解其个人健康记录的使用情况，以使未来用户安心。
