在儿童自闭症学习健康网络注册处收集和访问结果的偏好
Donna S Murray1, Julia S Anixt1, Vijay Vasudevan2
1Division of Developmental & Behavioral Pediatrics, Cincinnati Children's Hospital Medical Center, University of Cincinnati College of Medicine, Department of Pediatrics, Cincinnati, OH.
Journal of developmental and behavioral pediatrics : JDBP
|August 21, 2025
概括
了解包括家长和临床医生在内的患者登记最终用户优先事项是改善学习健康网络数据收集和使用的关键. 家庭直接获取数据,显而易见的临床益处提高了参与和护理.
科学领域:
- 医疗服务研究
- 临床信息学
- 患者报告的结果
背景情况:
- 学习健康网络利用临床和家长报告结果 (PRO) 数据进行决策,研究和质量改进.
- 优化数据收集和使用需要了解不同患者登记最终用户的优先事项:临床医生,研究人员和患者/家庭.
研究的目的:
- 调查家长和临床医生对患者登记数据的收集和使用的优先事项.
- 在自闭症护理网络 (ACNet) 中识别影响家长和临床医生的注册数据的因素.
主要方法:
- 首先对家长 (n=93) 和临床医生 (n=167) 进行调查.
- 在ACNet网站上对家长 (n=9) 和临床医生/研究人员 (n=7) 进行了针对性的采访.
- 这项研究重点是了解目前的注册数据使用情况,并确定家长和临床医生组的主要优先事项.
主要成果:
- 60%的家长以前收到了行为数据,90%的人认为这有助于理解;首选的访问方式是通过在线门户 (72%) 或电子医疗记录 (59%).
- 如果评估与孩子的困难相关,父母表示愿意进行纵向调查;临床医生优先考虑易于获取数据 (84%),临床结果相关性 (81%) 和症状变化 (76%).
- 两组都建议评估育儿压力和健康的社会决定因素;临床医生也重视家庭完成的便利性 (80%).
结论:
- 结合最终用户优先级可以显著提高患者登记数据的收集,分析和应用.
- 提供家庭直接访问他们的数据,并证明其在优化临床护理方面的有用性,可以增加参与的意愿.
- 调整数据收集与用户需求对于有效的学习卫生系统和改善患者结果至关重要.
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