Lombardi Comprehensive Cancer Center, Georgetown University Medical Center, 3300 Whitehaven Street NW, Washington, DC 20007, USA.
Am J Prev Med. 2011 May;40(5 Suppl 2):S208-16. doi: 10.1016/j.amepre.2011.01.013.
Pediatric palliative care currently faces many challenges including unnecessary pain from insufficiently personalized treatment, doctor-patient communication breakdowns, and a paucity of usable patient-centric information. Recent advances in informatics for consumer health through eHealth initiatives have the potential to bridge known communication gaps, but overall these technologies remain under-utilized in practice.
This paper seeks to identify effective uses of existing and developing health information technology (HIT) to improve communications and care within the clinical setting.
A needs analysis was conducted by surveying seven pediatric oncology patients and their extended support network at the Lombardi Pediatric Clinic at Georgetown University Medical Center in May and June of 2010. Needs were mapped onto an existing inventory of emerging HIT technologies to assess what existing informatics solutions could effectively bridge these gaps.
Through the patient interviews, a number of communication challenges and needs in pediatric palliative cancer care were identified from the interconnected group perspective surrounding each patient. These gaps mapped well, in most cases, to existing or emerging cyberinfrastructure. However, adoption and adaptation of appropriate technologies could improve, including for patient-provider communication, behavioral support, pain assessment, and education, all through integration within existing work flows.
This study provides a blueprint for more optimal use of HIT technologies, effectively utilizing HIT standards-based technology solutions to improve communication. This research aims to further stimulate the development and adoption of interoperable, standardized technologies and delivery of context-sensitive information to substantially improve the quality of care patients receive within pediatric palliative care clinics and other settings.
儿科姑息治疗目前面临许多挑战，包括因治疗不够个性化而导致的不必要的疼痛、医患沟通障碍，以及缺乏可用的以患者为中心的信息。通过电子健康(eHealth)计划在消费者健康信息学方面的最新进展有可能弥合已知的沟通差距，但总体而言，这些技术在实践中仍未得到充分利用。
本文旨在确定现有和新兴健康信息技术(HIT)的有效用途，以改善临床环境中的沟通和护理。
通过 2010 年 5 月至 6 月在乔治敦大学医学中心 Lombardi 儿科诊所对 7 名儿科肿瘤患者及其扩展支持网络进行调查，进行了需求分析。需求被映射到现有的新兴 HIT 技术清单上，以评估哪些现有的信息学解决方案可以有效地弥合这些差距。
通过对患者的访谈，从每个患者周围相互关联的群体角度，确定了儿科姑息癌症护理中存在的一些沟通挑战和需求。这些差距在大多数情况下都很好地映射到现有的或新兴的网络基础设施上。然而，通过在现有工作流程中进行集成，可以改进适当技术的采用和适应，包括患者与提供者之间的沟通、行为支持、疼痛评估和教育。
本研究为更优化地使用 HIT 技术提供了蓝图，有效地利用基于 HIT 标准的技术解决方案来改善沟通。本研究旨在进一步刺激可互操作、标准化技术的开发和采用，并提供上下文敏感的信息，以显著提高患者在儿科姑息治疗诊所和其他环境中接受的护理质量。
