Weitzman Elissa R, Kaci Liljana, Quinn Maryanne, Mandl Kenneth D
Children's Hospital Informatics Program at the Harvard-MIT Division of Health Sciences and Technology, Children's Hospital Boston, Boston, Massachusetts 02215, USA.
J Diabetes Sci Technol. 2011 Jan 1;5(1):47-54. doi: 10.1177/193229681100500107.
New patient-centered information technologies are needed to address risks associated with health care transitions for adolescents and young adults with diabetes, including systems that support individual and structural impediments to self- and clinical-care.
We describe the personally controlled health record (PCHR) system platform and its key structural capabilities and assess its alignment with tenets of the chronic care model (CCM) and the social-behavioral and health care ecologies within which adolescents and young adults with diabetes mature.
Configured as Web-based platforms, PCHRs can support a new class of patient-facing applications that serve as monitoring and support systems for adolescents navigating complex social, developmental, and health care transitions. The approach can enable supportive interventions tailored to individual patient needs to boost adherence, self-management, and monitoring.
The PCHR platform is a paradigm shift for the organization of health information systems and is consistent with the CCM and conceptualizations of patient- and family-centered care for diabetes. Advancing the approach augers well for improvement around health care transitions for youth and also requires that we address (i) structural barriers impacting diabetes care for maturing youth; (ii) challenges around health and technology literacy; (iii) privacy and confidentiality issues, including sharing of health information within family and institutional systems; and (iv) needs for evaluation around uptake, impacts, and outcomes.
需要新的以患者为中心的信息技术来应对糖尿病青少年和青年在医疗保健过渡过程中面临的风险,包括支持个人和结构障碍以促进自我保健和临床护理的系统。
我们描述了个人控制的健康记录(PCHR)系统平台及其关键结构功能,并评估其与慢性病护理模式(CCM)的原则以及糖尿病青少年和青年成长所处的社会行为和医疗保健生态的一致性。
PCHR配置为基于网络的平台,可以支持一类新的面向患者的应用程序,这些应用程序可作为监测和支持系统,帮助青少年应对复杂的社会、发育和医疗保健过渡。这种方法可以实现根据患者个体需求定制的支持性干预措施,以提高依从性、自我管理和监测能力。
PCHR平台是健康信息系统组织的范式转变,与CCM以及糖尿病患者和家庭为中心的护理概念一致。推进这种方法有望改善青少年的医疗保健过渡,同时也要求我们解决:(i)影响成熟青少年糖尿病护理的结构障碍;(ii)健康和技术素养方面的挑战;(iii)隐私和保密问题,包括在家庭和机构系统内共享健康信息;以及(iv)围绕采用、影响和结果的评估需求。