Department of Health Policy and Management, Johns Hopkins Bloomberg School of Public Health, Baltimore, MD, United States.
OpenNotes, Beth Israel Deaconess Medical Center, Boston, MA, United States.
J Med Internet Res. 2023 Nov 22;25:e46146. doi: 10.2196/46146.
The patient portal is a widely available secure digital platform offered by care delivery organizations that enables patients to communicate electronically with clinicians and manage their care. Many organizations allow patients to authorize family members or friends-"care partners"-to share access to patient portal accounts, thus enabling care partners to receive their own identity credentials. Shared access facilitates trilateral information exchange among patients, clinicians, and care partners; however, uptake and awareness of this functionality are limited.
We partnered with 3 health care organizations to co-design an initiative that aimed to increase shared access registration and use and that can be implemented using existing patient portals.
In 2020, we undertook a rigorous selection process to identify 3 geographically diverse health care organizations that had engaged medical informatics teams and clinical champions within service delivery lines caring for older adults. We prioritized selecting organizations that serve racially and socioeconomically diverse populations and possess sophisticated reporting capabilities, a stable patient portal platform, a sufficient volume of older adult patients, and active patient and family advisory councils. Along with patients and care partners, clinicians, staff, and other stakeholders, the study team co-designed an initiative to increase the uptake of shared access guided by either an iterative, human-centered design process or rapid assessment procedures of stakeholders' inputs.
Between February 2020 and April 2022, 73 stakeholder engagements were conducted with patients and care partners, clinicians and clinic staff, medical informatics teams, marketing and communications staff, and administrators, as well as with funders and thought leaders. We collected insights regarding (1) barriers to awareness, registration, and use of shared access; (2) features of consumer-facing educational materials to address identified barriers; (3) features of clinician- and staff-facing materials to address identified barriers; and (4) approaches to fit the initiative into current workflows. Using these inputs iteratively via a human-centered design process, we produced brochures and posters, co-designed organization-specific web pages detailing shared access registration processes, and developed clinician and staff talking points about shared access and staff tip sheets that outline shared access registration steps. Educational materials emphasized the slogan "People remember less than half of what their doctors say," which was selected from 9 candidate alternatives as resonating best with the full range of the initiative's stakeholders. The materials were accompanied by implementation toolkits specifying and reinforcing workflows involving both in-person and telehealth visits.
Meaningful and authentic stakeholder engagement allowed our deliberate, iterative, and human-centered co-design aimed at increasing the use of shared access. Our initiative has been launched as a part of a 12-month demonstration that will include quantitative and qualitative analysis of registration and use of shared access. Educational materials are publicly available at Coalition for Care Partners.
患者门户是一种广泛可用的安全数字平台，由医疗服务提供者提供，使患者能够与临床医生进行电子沟通并管理他们的医疗护理。许多组织允许患者授权家庭成员或朋友（“护理伙伴”）共享患者门户账户访问权限，从而使护理伙伴能够获得自己的身份凭证。共享访问促进了患者、临床医生和护理伙伴之间的三方信息交流；然而，这种功能的采用和意识都很有限。
我们与 3 家医疗保健组织合作，共同设计了一项旨在增加共享访问注册和使用的计划，该计划可以使用现有的患者门户来实施。
在 2020 年，我们通过严格的选择过程，确定了 3 家地理位置不同的医疗保健组织，这些组织在为老年人提供服务的服务线内已经与医疗信息学团队和临床冠军合作。我们优先选择服务于不同种族和社会经济背景的组织，并具有复杂的报告能力、稳定的患者门户平台、足够数量的老年患者以及活跃的患者和家庭咨询委员会。研究团队与患者和护理伙伴、临床医生、工作人员和其他利益相关者一起，共同设计了一项旨在提高共享访问采用率的计划，该计划由迭代的以人为中心的设计过程或对利益相关者输入的快速评估程序指导。
在 2020 年 2 月至 2022 年 4 月期间，与患者和护理伙伴、临床医生和诊所工作人员、医疗信息学团队、营销和传播人员以及管理人员以及资助者和思想领袖进行了 73 次利益相关者参与。我们收集了有关以下方面的见解：（1）对共享访问的意识、注册和使用的障碍；（2）解决已确定障碍的面向消费者的教育材料的特征；（3）解决已确定障碍的面向临床医生和员工的材料的特征；以及（4）适合当前工作流程的方法。我们通过以人为中心的设计过程反复使用这些输入，制作了宣传册和海报，共同设计了组织特定的网页，详细说明了共享访问注册流程，并为临床医生和员工制定了关于共享访问和员工提示单的话题，这些提示单概述了共享访问注册步骤。教育材料强调了“人们记住的医生说的不到一半”的口号，该口号是从 9 个候选方案中选择的，与该计划的所有利益相关者都最相关。这些材料还附有实施工具包，规定并加强了包括面对面和远程医疗访问在内的工作流程。
有意义和真实的利益相关者参与使我们能够进行深思熟虑、迭代和以人为中心的共同设计，以提高共享访问的使用。我们的计划已作为为期 12 个月的演示的一部分推出，该演示将包括对共享访问的注册和使用进行定量和定性分析。教育材料可在 Coalition for Care Partners 上公开获取。
