Evaluation of Pediatric Patient Portals

基于网络的医疗记录、自我管理和社会支持有利于患有艾滋病毒、糖尿病、关节炎和其他疾病的成年人，但针对儿科患者的数据较少。该项目的目的是：A)通过基于实验室的定性和定量方法评估电子患者门户界面的可用性；B)评估在儿科专科实践中患者门户的可行性，通过以下方式衡量：1)合格比例

Web-based medical records, self-management, and social support benefit adults with HIV, diabetes, arthritis, and other conditions, but less data exist for pediatric patients. The aims of this project are: A) to evaluate, by means of laboratory-based qualitative and quantitative methods, the usability of an electronic patient portal interface; B) to evaluate the feasibility, in specialty pediatrics practice, of patient portals as measured by: 1) the proportion of eligible population who enroll in the portals; 2) retention of users over 3- and 6-month periods; 3) characteristics of patients/families who enroll in and use the portals vs. those who do not; and 4) parent and health care provider reports of the acceptability, accuracy, and usefulness of the portal; C) to generate preliminary data, hypotheses, and methods for a future R01 to determine the effects of patient portals on 1) communication between parents and providers; 2) the ability of parents to manage their child's illness at home; and 3) hassles associated with communicating with health care providers and obtaining needed information. Portals will be implemented in three pediatric clinics: diabetes, cystic fibrosis, and juvenile arthritis. Usability will be tested with 15 subjects in a computer usability laboratory, and the interfaces will be improved based on that testing. Portal usage logs and chronic disease registries will be used to determine the number and characterizes of patients who enroll and use the portals at 3 and 6 months post-enrollment. Telephone interviews with 140 users and web-based surveys with 70 health care providers will determine acceptability and perceived usefulness of the portals. Qualitative analysis of interviews with 30 portals users will explain the range of use of the portals and how parents use portals to manage their child's illness.