Department of Medicine, University of Washington School of Medicine, Seattle, WA, USA.
Department of Biostatistics, University of Washington School of Medicine, Seattle, WA, USA.
Patient Educ Couns. 2022 Feb;105(2):290-296. doi: 10.1016/j.pec.2021.08.025. Epub 2021 Aug 26.
Care partners are key members of patients' health care teams, yet little is known about their experiences accessing patient information via electronic portals.
To better understand the characteristics and perceptions of care partners who read patients' electronic visit notes.
Focus groups with diverse patients from a community health center provided input into survey development.
We contacted patient portal users at 3 geographically distinct sites in the US via email in 2017 for an online survey including open ended questions which we qualitatively analyzed.
Respondents chose whether to answer as care partners (N = 874) or patients (N = 28,782). Among care partner respondents, 44% were spouses, 43% children/other family members, and 14% friends/neighbors/other. Both care partners and patients reported that access to electronic notes was very important for promoting positive health behaviors, but care partners' perceptions of importance were consistently more positive than patients' perceptions of engagement behaviors. Open-ended comments included positive benefits such as: help with remembering the plan for care, coordinating care with other doctors, decreasing stress of care giving, improving efficiency of visits, and supporting patients from a geographical distance. They also offered suggestions for improving electronic portal and note experience for care partners such as having a separate log on for care partners; having doctors avoid judgmental language in their notes; and the ability to prompt needed medical care for patients.
Care partners value electronic access to patients' health information even more than patients. The majority of care partners were family members, whose feedback is important for improving portal design that effectively engages these care team members.
Patient care in the time of COVID-19 increasingly requires social distancing which may place additional burden on care partners supporting vulnerable patients. Access to patient notes may promote quality of care by keeping care partners informed, and care partner's input should be used to optimize portal design and electronic access to patient information.
照护者是患者医疗团队的重要成员，但对于他们通过电子门户获取患者信息的经验却知之甚少。
深入了解阅读患者电子就诊记录的照护者的特征和看法。
来自社区医疗中心的不同患者的焦点小组为调查的制定提供了意见。
我们于 2017 年通过电子邮件联系了美国 3 个地理位置不同的地点的患者门户用户，以开展在线调查，其中包括我们进行定性分析的开放式问题。
被调查者选择以照护者（N=874）或患者（N=28782）的身份回答问题。在照护者受访者中，44%是配偶，43%是子女/其他家庭成员，14%是朋友/邻居/其他。照护者和患者都报告说，获取电子记录对于促进积极的健康行为非常重要，但照护者对重要性的看法始终比患者对参与行为的看法更为积极。开放性评论包括积极的好处，例如：帮助记住护理计划，与其他医生协调护理，减轻护理压力，提高就诊效率，以及在地理距离上支持患者。他们还为改善照护者的电子门户和记录体验提出了建议，例如为照护者提供单独的登录名；医生在记录中避免使用评判性语言；以及为患者提供需要的医疗护理的能力。
照护者对电子访问患者健康信息的重视程度甚至超过了患者。大多数照护者是家庭成员，他们的反馈对于改善有效吸引这些照护团队成员的门户设计非常重要。
在 COVID-19 时代，患者护理越来越需要保持社交距离，这可能会给支持脆弱患者的照护者带来额外的负担。访问患者记录可以通过让照护者了解情况来提高护理质量，并且应该利用照护者的意见来优化门户设计和电子访问患者信息。
