背景:为了在慢性护理中实现个性化治疗和共享决策,收集相关健康信息。然而,健康信息通常分散在医院信息系统中,数字健康应用程序,和问卷门户。这也涉及血友病护理,其中分散的信息阻碍了综合护理。我们打算为患者共同设计全国数字个人健康记录(PHR),以帮助管理他们的健康信息。为此,用户观点至关重要。
目的:本研究旨在评估患者和医疗保健提供者关于在荷兰血友病治疗中使用PHR的观点,所需功能,期望和担忧。
方法:在这项半结构化访谈研究中,19名儿童和成人血友病患者,父母,以及患有其他遗传性出血性疾病的女性,以及在血友病治疗中心内外工作的18名医疗保健提供者,参与。分别探讨了患者和提供者的观点。为了探索需求,参与者被要求优先考虑功能。
结果:参与者预计PHR将增加健康信息的透明度,提高患者对疾病的认识,并帮助协调卫生保健提供者和机构之间的护理。优先功能包括整合相关健康信息和患者输入的数据。制定的期望和关注集中在4个主题:可用性,安全,包容性,和执行。虽然患者对医疗化表示担忧(即,更多对抗性的提醒他们的疾病),提供者担心工作量增加。
结论:血友病患者,他们的父母,卫生保健提供者欢迎PHR的发展,正如他们预期的那样,这将导致更好的协调护理。制定的期望和关注将有助于成功开发血友病患者的PHR,最终,所有患有慢性病的人。
BACKGROUND: To enable personalized treatment and shared decision-making in chronic care, relevant health information is collected. However, health information is often fragmented across hospital information systems, digital health apps, and questionnaire portals. This also pertains to hemophilia care, in which scattered information hampers integrated care. We intend to co-design a nationwide digital personal health record (PHR) for patients to help manage their health information. For this, user perspectives are crucial.
OBJECTIVE: This study aims to assess patients\' and health care providers\' perspectives regarding the use of a PHR in hemophilia care in the Netherlands, required functionalities, and expectations and concerns.
METHODS: In this semistructured interview study, 19 pediatric and adult persons with hemophilia, parents, and women with other inherited bleeding disorders, as well as 18 health care providers working within and outside of hemophilia treatment centers, participated. Perspectives of patients and providers were explored separately. To explore requirements, participants were asked to prioritize functionalities.
RESULTS: Participants expected a PHR would increase the transparency of health information, improve patients\' understanding of their illness, and help the coordination of care between health care providers and institutions. Prioritized functionalities included the integration of relevant health information and patient-entered data. Formulated expectations and concerns focused on 4 themes: usability, safety, inclusiveness, and implementation. While patients expressed worries over medicalization (ie, more confrontational reminders of their illness), providers were concerned about an increased workload.
CONCLUSIONS: People with hemophilia, their parents, and health care providers welcomed the development of a PHR, as they expected it would result in better coordinated care. Formulated expectations and concerns will contribute to the successful development of a PHR for persons with hemophilia, and ultimately, for all persons with a chronic condition.