Department of Health Policy and Management, Johns Hopkins University, Baltimore, Maryland, USA.
J Pain Symptom Manage. 2011 Oct;42(4):526-34. doi: 10.1016/j.jpainsymman.2010.12.006. Epub 2011 Mar 31.
Routine electronic patient-reported outcome collection in patients with advanced disease could improve communication among patients, caregivers, and providers, the timeliness of identifying problems, and effectiveness of follow-up.
To develop a Web-based tool to collect symptoms and needed data and provide feedback to hospice and palliative care patients, caregivers, and providers.
We developed Tell Us™ based on an existing pure Web technology platform, the Medical Decision Logic, Inc., Health Science Process Framework. The software development process included eliciting information on systems and needs, mapping care processes with three diverse hospices, and soliciting ideas for the software from clinicians and researchers. We developed a prototype software product, incorporated the hospices' processes, assessment questions, and educational materials, and refined the product with feedback from other hospice and palliative care professionals.
Tell Us™ includes modules for authoring and deploying clinical queries and completion schedules, for enrolling clinical sites and patients for patients and/or families to complete assigned assessments on a scheduled basis, and for providers to view patient-reported data. Tell Us™ provides customizable automated provider e-mail alerts based on patient responses (such as uncontrolled symptoms or need for medication refills) and provides educational materials targeted to patient needs.
This Web-based toolset may be useful for improving communication among hospice and palliative care patients, caregivers, and providers, and proactive patient management. Future research will involve integrating the software into care and evaluating its feasibility and use for data collection, patient education, and improving outcomes.
在晚期疾病患者中常规进行电子患者报告结局采集，可以改善患者、照护者和提供者之间的沟通，及时发现问题，并提高后续治疗的效果。
开发一种基于网络的工具，用于采集症状和所需数据，并为临终关怀和姑息治疗患者、照护者和提供者提供反馈。
我们在现有的纯网络技术平台 Medical Decision Logic, Inc.，Health Science Process Framework 的基础上开发了 Tell Us™。软件开发过程包括收集有关系统和需求的信息，与三家不同的临终关怀机构映射照护流程，并从临床医生和研究人员那里征求软件创意。我们开发了一个原型软件产品，整合了临终关怀机构的流程、评估问题和教育材料，并通过其他临终关怀和姑息治疗专业人员的反馈来完善产品。
Tell Us™ 包括用于编写和部署临床查询和完成计划的模块，用于为临床机构和患者注册，以便患者和/或家属按计划完成指定的评估，以及供提供者查看患者报告的数据。Tell Us™ 根据患者的反应（如未控制的症状或需要药物补充）提供定制的自动提供者电子邮件提醒，并提供针对患者需求的教育材料。
这个基于网络的工具集可能有助于改善临终关怀和姑息治疗患者、照护者和提供者之间的沟通，以及主动的患者管理。未来的研究将包括将该软件集成到护理中，并评估其在数据收集、患者教育和改善结果方面的可行性和使用。
