Sisk Bryan, Antes Alison L, Bereitschaft Christine, Enloe Madi, Bourgeois Fabienne, DuBois James
Bioethics Research Center, Department of Medicine, Washington University School of Medicine, St Louis, MO, United States.
Division of Hematology and Oncology, Department of Pediatrics, Washington University, St Louis, MO, United States.
JMIR Pediatr Parent. 2024 Mar 11;7:e49177. doi: 10.2196/49177.
Web-based patient portals are tools that could support adolescents in managing their health and developing autonomy. However, informatics administrators must navigate competing interests when developing portal access policies for adolescents and their parents.
We aimed to assess the perspectives of informatics administrators on guiding principles for the development of web-based health care portal access policies in adolescent health care.
We interviewed informatics administrators from US hospitals with ≥50 dedicated pediatric beds. We performed a thematic analysis of guiding principles for developing and implementing adolescent portal access policies.
We interviewed 65 informatics leaders who represented 63 pediatric hospitals, 58 health care systems, 29 states, and 14,379 pediatric hospital beds. Participants described 9 guiding principles related to three overarching themes: (1) balancing confidentiality and other care needs, (2) balancing simplicity and granularity, and (3) collaborating and advocating. Participants described the central importance of prioritizing the health and safety of the adolescent while also complying with state and federal laws. However, there were differing beliefs about how to prioritize health and safety and what role parents should play in supporting the adolescent's health care. Participants also identified areas where clinicians and institutions can advocate for adolescents, especially with electronic health record vendors and legislators.
Informatics administrators provided guiding principles for adolescent portal access policies that aimed to balance the competing needs of adolescent confidentiality and the usefulness of the portal. Portal access policies must prioritize the adolescent's health and safety while complying with state and federal laws. However, institutions must determine how to best enact these principles. Institutions and clinicians should strive for consensus on principles to strengthen advocacy efforts with institutional leadership, electronic health record vendors, and lawmakers.
基于网络的患者门户是有助于青少年管理自身健康并培养自主性的工具。然而，信息学管理人员在为青少年及其父母制定门户访问政策时，必须应对相互冲突的利益。
我们旨在评估信息学管理人员对于青少年医疗保健中基于网络的医疗保健门户访问政策制定指导原则的看法。
我们采访了来自美国拥有≥50张专用儿科床位医院的信息学管理人员。我们对制定和实施青少年门户访问政策的指导原则进行了主题分析。
我们采访了65位信息学负责人，他们代表了63家儿科医院、58个医疗保健系统、29个州以及14379张儿科医院床位。参与者描述了与三个总体主题相关的9条指导原则：（1）平衡保密性和其他护理需求；（2）平衡简单性和细致性；（3）合作与倡导。参与者描述了在优先考虑青少年健康和安全同时遵守州和联邦法律的核心重要性。然而，对于如何优先考虑健康和安全以及父母在支持青少年医疗保健中应扮演何种角色存在不同看法。参与者还确定了临床医生和机构可以为青少年倡导的领域，特别是与电子健康记录供应商和立法者相关的领域。
信息学管理人员提供了青少年门户访问政策的指导原则，旨在平衡青少年保密性和门户实用性的相互竞争需求。门户访问政策必须在遵守州和联邦法律的同时优先考虑青少年的健康和安全。然而，机构必须确定如何最好地实施这些原则。机构和临床医生应努力就原则达成共识，以加强与机构领导层、电子健康记录供应商和立法者的倡导工作。
