Division of Clinical Informatics, Department of Medicine, Beth Israel Deaconess Medical Centre, Harvard Medical School, Boston, Massachusetts 02446, USA.
J Am Med Inform Assoc. 2010 Mar-Apr;17(2):192-5. doi: 10.1136/jamia.2009.000927.
To assess the patient-centeredness of personal health records (PHR) and offer recommendations for best practice guidelines.
Semi-structured interviews were conducted in seven large early PHR adopter organizations in 2007. Organizations were purposively selected to represent a variety of US settings, including medium and large hospitals, ambulatory care facilities, insurers and health plans, government departments, and commercial sectors.
Patient-centeredness was assessed against a framework of care that includes: (1) respect for patient values, preferences, and expressed needs; (2) information and education; (3) access to care; (4) emotional support to relieve fear and anxiety; (5) involvement of family and friends; (6) continuity and secure transition between healthcare providers; (7) physical comfort; (8) coordination of care. Within this framework we used evidence for patient preferences (where it exists) to compare existing PHR policies, and propose a best practice model.
Most organizations enable many patient-centered functions such as data access for proxies and minors. No organization allows patient views of clinical progress notes, and turnaround times for PHR reporting of normal laboratory results can be up to 7 days.
Findings suggest patient-centeredness for personal health records can be improved, and recommendations are made for best practice guidelines.
评估个人健康记录（PHR）的以患者为中心程度，并为最佳实践指南提供建议。
2007 年，在七个大型早期 PHR 采用者组织中进行了半结构化访谈。这些组织是根据包括美国各种环境的医疗机构，如中型和大型医院、门诊护理设施、保险公司和医疗计划、政府部门和商业部门在内的特定目的选择的。
根据包括以下内容的护理框架评估以患者为中心的程度：（1）尊重患者的价值观、偏好和表达的需求；（2）信息和教育；（3）获得护理的机会；（4）情感支持以减轻恐惧和焦虑；（5）家庭成员和朋友的参与；（6）医疗保健提供者之间的连续性和安全过渡；（7）身体舒适；（8）护理协调。在这个框架内，我们使用了患者偏好的证据（如果存在的话）来比较现有的 PHR 政策，并提出了最佳实践模型。
大多数组织都允许许多以患者为中心的功能，例如代理人和未成年人的数据访问。没有组织允许患者查看临床进度记录，PHR 报告正常实验室结果的周转时间最长可达 7 天。
研究结果表明，个人健康记录的以患者为中心程度可以得到改善，并为最佳实践指南提出了建议。
