Department of General Medicine, Beth Israel Deaconess Medical Center, Boston, MA, United States.
Department of Health Policy and Management, Johns Hopkins Bloomberg School of Public Health, Baltimore, MD, United States.
J Med Internet Res. 2024 Jun 27;26:e49394. doi: 10.2196/49394.
The US health care delivery system does not systematically engage or support family or friend care partners. Meanwhile, the uptake and familiarity of portals to personal health information are increasing among patients. Technology innovations, such as shared access to the portal, use separate identity credentials to differentiate between patients and care partners. Although not well-known, or commonly used, shared access allows patients to identify who they do and do not want to be involved in their care. However, the processes for patients to grant shared access to portals are often limited or so onerous that interested patients and care partners often circumvent the process entirely. As a result, the vast majority of care partners resort to accessing portals using a patient's identity credentials-a "do-it-yourself" solution in conflict with a health systems' legal responsibility to protect patient privacy and autonomy. The personal narratives in this viewpoint (shared by permission) elaborate on quantitative studies and provide first-person snapshots of challenges faced by patients and families as they attempt to gain or grant shared access during crucial moments in their lives. As digital modalities increase patient roles in health care interactions, so does the importance of making shared access work for all stakeholders involved-patients, clinicians, and care partners. Electronic health record vendors must recognize that both patients and care partners are important users of their products, and health care organizations must acknowledge and support the critical contributions of care partners as distinct from patients.
美国的医疗服务体系没有系统地让患者的家属或朋友参与其中或为其提供支持。与此同时,越来越多的患者开始使用个人健康信息门户。技术创新,如共享门户访问权限,使用单独的身份凭证来区分患者和护理伙伴。尽管共享访问权限并不广为人知或普遍使用,但它允许患者确定他们希望或不希望谁参与他们的护理。然而,患者授予门户共享访问权限的流程通常受到限制或繁琐,以至于有兴趣的患者和护理伙伴通常完全绕过该流程。结果,绝大多数护理伙伴都使用患者的身份凭证访问门户,这是一种与医疗系统保护患者隐私和自主权的法律责任相冲突的“自行解决”的方法。本观点(经许可共享)中的个人叙述详细阐述了定量研究,并提供了患者和家庭在生活关键时期试图获得或授予共享访问权限时所面临挑战的第一人称快照。随着数字模式增加了患者在医疗保健互动中的角色,使所有相关利益相关者(患者、临床医生和护理伙伴)都能使用共享访问权限变得更加重要。电子病历供应商必须认识到,患者和护理伙伴都是其产品的重要用户,医疗保健组织必须承认并支持护理伙伴作为患者的区别而做出的重要贡献。
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