Department of Pediatrics, University of Wisconsin School of Medicine and Public Health, Madison, Wisconsin.
School of Public Health, San Diego State University, San Diego, California.
J Adolesc Health. 2024 Jan;74(1):155-160. doi: 10.1016/j.jadohealth.2023.08.008. Epub 2023 Oct 11.
In 2021, federal guidelines mandated that health-care organizations share clinicians' notes with patients to increase information transparency. While findings indicate advantages for adult patients, less is known about note-sharing from the viewpoint of adolescents. This study aims to identify adolescent, parent, and clinician perspectives on the anticipated benefits and concerns of giving adolescents access to clinicians' notes and strategies to support note-sharing in this population.
We conducted six focus groups with adolescents, parents, and clinicians at a children's hospital from May to October 2021. A semistructured facilitator guide captured participant perspectives of note-sharing benefits, concerns, and strategies. Two researchers independently coded and analyzed transcript data using thematic analysis; a third researcher reconciled discrepancies.
38 stakeholders (17 adolescents, 10 parents, and 11 clinicians) described four benefits, three concerns, and four implementation strategies regarding adolescent note-sharing. Potential benefits included adolescents using notes to remember and reinforce the visit, gaining knowledge about their health, strengthening the adolescent-clinician relationship, and increasing agency in health care decisions. Concerns included notes leading to a breach in confidentiality, causing negative emotions, and becoming less useful for clinicians. Strategies included making note-sharing more secure, optimizing note layout and content, setting clear expectations, and having a portion of the note for clinician use only.
Stakeholders suggest multiple strategies to optimize the implementation of note-sharing to support adolescent patients, parents, and clinicians as hospitals work to comply with federal regulations. These strategies may reinforce the potential benefits and mitigate the challenges of sharing notes with adolescent patients.
2021 年，联邦指南要求医疗机构将临床医生的记录与患者共享，以提高信息透明度。虽然研究结果表明这对成年患者有好处，但对于青少年患者来说，关于共享记录的信息则知之甚少。本研究旨在从青少年、家长和临床医生的角度出发，确定让青少年获取临床医生记录的预期益处和关注点，以及在该人群中支持共享记录的策略。
我们于 2021 年 5 月至 10 月在一家儿童医院进行了 6 组焦点小组讨论，参与者包括青少年、家长和临床医生。半结构化的主持人指南记录了参与者对共享记录的益处、关注点和策略的看法。两位研究人员独立对转录数据进行编码和分析，使用主题分析；第三位研究人员则解决了分歧。
38 名利益相关者（17 名青少年、10 名家长和 11 名临床医生）描述了关于青少年共享记录的四个潜在益处、三个关注点和四个实施策略。潜在的益处包括青少年可以用记录来记住和强化就诊、了解自己的健康状况、增强青少年与临床医生的关系，以及增加对医疗决策的自主权。关注点包括记录可能导致保密性被破坏、引起负面情绪，以及对临床医生的用处降低。策略包括使记录共享更加安全、优化记录的布局和内容、设定明确的期望，以及为临床医生保留部分记录。
利益相关者提出了多种策略来优化记录共享的实施，以支持医院在遵守联邦法规的同时，为青少年患者、家长和临床医生提供支持。这些策略可能会增强共享记录的潜在益处，并减轻与青少年患者共享记录的挑战。
