Empowering SCD Patients with Web Tools to Improve Care Communications

描述（由申请人提供）：SBIR项目“用网络工具帮助镰状细胞病患者改善护理沟通”的开创性和战略目标是创建一个专门的利基产品，改善急诊科（ED）对出现痛苦危机的镰状细胞病患者（SCD）的治疗，减少昂贵的住院费用。目前，这些患者的不幸的规范经验是基于急诊科工作人员缺乏通过定量疼痛评估来滴定止痛药给药的具体知识，加上不完善的医疗记录系统，往往使得难以解决患者身份和病史的不确定性，而且往往缺乏对SCD及其治疗的深入医学理解。该项目将通过网络技术与科学和临床知识的创新结合来解决这些问题，以创建一种新的基于网络的病例管理注册产品（“webCMR”）。webCMR将为急诊科人员提供关于患者身份的安全明确的信息，使用数字照片和人口统计数据，患者的初级保健和血液学提供者的信息，镰状细胞病的类型，输血并发症，家庭使用的药物以及推荐用于急性血管闭塞紧急治疗的药物。WebCMR将根据对疼痛的反复定量评估，为疼痛药物的滴定管理提供明确的指导，并向急诊科医生传达经过验证的最佳实践。它会自动生成一封电子邮件给病人的医生，通知他们急诊科的来访。随着这种直接干预改善急诊科SCD患者的护理，webCMR的技术创新将通过解决数据通信来支持公共卫生的科学过程，与其他系统的互操作性，以及更广泛地应用于SCD管理的其他阶段和其他疾病领域，从而增强其实用性和商业价值。第一阶段将包括研究以区域登记和数据仪表板形式进行的数据通信，以供马里兰州卫生和精神卫生部（DHMH）使用，以监测人口一级的急诊科就诊情况。该登记处预计对DHMH具有重大价值，有助于为科学政策制定提供信息并监测结果。同样，它将成为保险公司关于住院率的有用数据来源，可以用来证明使用webCMR支付的合理性，为可持续性提供一个商业案例。将住院率降低10%将为医学博士的第三方支付者每年节省至少500万美元，平均每位患者每年节省近3000美元。这些经济学为企业的可持续性和增长提供了机会。webCMR的创建将高度专注于让ED提供者和SCD患者参与软件设计和实施过程，确保webCMR的病例管理方面将仔细适应患者和提供者的优先需求。webCMR的一个关键设计目标是促进患者和提供者之间积极和系统的沟通。同样，webCMR的注册方面将仔细调整以适应公共卫生官员的优先需求。该产品的评估将解决患者和急诊科工作人员的潜在使用负担，并评估与当前做法相比的益处。

DESCRIPTION (provided by applicant): The pioneering and strategic goal of this SBIR project "Empowering SCD Patients with Web Tools to Improve Care Communications" is to create a specialized niche product that improves emergency department (ED) treatment of patients with sickle cell disease (SCD) presenting with a painful crisis, decreasing costly hospital admissions. At present, the unfortunate normative experience of these patients is grounded in ED staff lacking specific knowledge for titrating pain medication administration with quantitative pain assessment, coupled with inadequate medical record systems that often make it difficult to resolve uncertainty about a patient's identity and medical history, and too often, lack of in-depth medical understating of SCD and its treatment. The project will address these issues with an innovative combination of web technology and scientific and clinical knowledge to create a novel web-based Case Management Registry product ("webCMR"). webCMR will provide ED personnel with secure and unambiguous information about the patient's identity, using a digital photograph and demographics, information about the patient's Primary Care and Hematology Providers, type of sickle cell disease, transfusion complications, medications used at home, and medications recommended for emergency treatment of acute vaso-occlusion. WebCMR will provide clear instructions for titrating administration of pain medication based on repeated quantitative assessment of pain, communicating proven best practices to ED providers. It will automatically generate an e-mail message to the patient's Providers, informing them of the ED visit. Along with this direct intervention to improve the care of patients with SCD in the ED, technology innovations in webCMR will strengthen its utility and commercial value by addressing data communications to support scientific processes for public health, interoperability with other systems, and generalizability for broader application to other stages of SCD management and other disease areas. Phase I will include study of data communications in the form of a regional registry and data dashboard to be developed for use by the Maryland State Department of Health and Mental Hygiene (DHMH) to monitor ED visits at the population level. This registry is expected to have significant value to DHMH, helping to inform scientific policy development and monitor outcomes. In a similar way, it will be a useful data source for insurance companies about rates of hospital admissions that can serve to justify payment for use of webCMR, providing a business case for sustainability. Reducing hospital admission rates by 10 percent would generate savings to third party payers in MD of at least $5 million annually, an average of nearly $3,000 per patient per year. These economics provide an opportunity for business sustainability and growth. The creation of webCMR will be highly focused on engaging ED providers and SCD patients with the software design and implementation process, ensuring that the Case Management aspect of webCMR will be carefully adapted to the priority needs of both patients and providers. A key design goal is for webCMR to facilitate positive and systematic communications between patients and providers. Likewise, the Registry aspect of webCMR will be carefully adapted to the priority needs of public health officials. The evaluation of the product will address the potential burden of use for both patient and ED staff, and assess benefits in comparison to current practices.