Creating a Patient Registry to Facilitate Data Sharing and Encourage Patient-Centered Approaches to Improving Health and Lowering Costs, 2013

This interventional pilot study was conducted in a primary care clinic to determine if patients would become more engaged in their own health and ask more questions of their physicians if they were provided data about patients similar to themselves. The study was conducted with 150 patients with a diagnosis of hypertension who had scheduled appointments with one of three participating physicians in the clinic. When they arrived at the clinic for their appointment, the patients were shown de-identified clinical data about similar patients with hypertension on a computer screen, given a printout of this information, and then proceeded to visit their physician. After the physician visit the patients completed a short survey. Their answers to the survey questions are recorded in the data file together with additional information about them, such as age, gender, race, smoking status and comorbidities. The three participating physicians completed a short survey at the end of the study. The results of that survey are summarized in a table provided with the technical documentation.

本干预性试点研究于某基层医疗诊所开展，旨在探究当为患者提供与其自身情况相似的患者的临床数据后，患者是否会更主动地参与自身健康管理，并向接诊医师提出更多问题。本研究纳入150名确诊高血压的患者，这些患者均已预约该诊所三位参与本研究的医师之一的门诊号。患者抵达诊所准备就诊时，将在电脑屏幕上查看针对相似高血压患者的去标识化（de-identified）临床数据，并获赠该信息的纸质打印件，随后前往医师处就诊。就诊结束后，患者需填写一份简短问卷。问卷作答结果与患者的年龄、性别、种族、吸烟状态及合并症等附加信息一同记录于数据文件中。三位参与本研究的医师于研究结束后填写了一份简短问卷，该问卷的结果已整理为表格，附于技术文档中。