Empowering SCD Patients with Web Tools to Improve Care Communications

描述（由申请人提供）：该SBIR项目的开创性和战略目标“通过网络工具增强SCD患者的能力以改善护理沟通”是创建一种专门的利基产品，以改善镰状细胞病（SCD）患者的急诊科（艾德）治疗，从而减少昂贵的住院费用。目前，这些患者的不幸的规范性经验是基于艾德工作人员缺乏定量疼痛评估滴定止痛药管理的具体知识，加上不充分的医疗记录系统，往往难以解决患者的身份和病史的不确定性，而且往往缺乏深入的医疗了解SCD及其治疗。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，以创建一个新的基于网络的病例管理注册产品（“webCMR”）。webCMR将为艾德人员提供关于患者身份的安全和明确的信息，使用数字照片和人口统计学资料、关于患者的初级保健和血液学提供者的信息、镰状细胞疾病的类型、输血并发症、在家使用的药物以及急性血管闭塞紧急治疗推荐的药物。WebCMR将根据疼痛的重复定量评估提供明确的止痛药滴定给药说明，并向艾德提供者传达经验证的最佳实践。它将自动生成一封电子邮件消息给患者的提供者，通知他们艾德访视。沿着这种直接干预以改善艾德中SCD患者的护理，webCMR中的技术创新将通过解决支持公共卫生科学过程的数据通信、与其他系统的互操作性以及更广泛应用于SCD管理的其他阶段和其他疾病领域的可推广性来加强其实用性和商业价值。第一阶段将包括以区域登记和数据仪表板的形式研究数据通信，以供马里兰州卫生和精神卫生部（DHMH）使用，以监测人口水平的艾德就诊。预计该登记册将对DHMH具有重要价值，有助于为科学政策制定提供信息并监测结果。以类似的方式，它将成为保险公司关于住院率的有用数据源，可以用来证明使用webCMR的付费合理性，为可持续性提供商业案例。将住院率降低10%将为MD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3,000美元。这些经济学为业务可持续发展和增长提供了机会。webCMR的创建将高度关注艾德提供者和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，将根据公共卫生官员的优先需要仔细调整网络CMR的登记方面。该产品的评估将解决患者和艾德工作人员的潜在使用负担，并评估与当前实践相比的益处。 公共卫生相关性：该项目名为“通过网络工具增强SCD患者的能力，以改善护理沟通”，将利用创新的网络技术和科学及临床知识，创建一个新的基于网络的病例管理注册产品（“webCMR”）。沿着这种直接干预以改善艾德中SCD患者的护理，webCMR还将解决旨在支持公共卫生政策、科学知识在医疗保健中的应用以及新知识的集中生成的更广泛目标。在流程层面，webCMR将是一个整合、翻译和转换系统，用于解决镰状细胞病中的健康差异，并解决我们医疗保健系统当前经济学中的缺陷，这为业务发展提供了机会。

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. PUBLIC HEALTH RELEVANCE: This project, title "Empowering SCD Patients with Web Tools to Improve Care Communications" will use innovative web technology and scientific and clinical knowledge to create a novel web-based Case Management Registry product ("webCMR"). Along with this direct intervention to improve the care of patients with SCD in the ED, webCMR will also address broader goals that are intended to support public health policy, the application of scientific knowledge to healthcare, and the focused generation of new knowledge. At the process level, webCMR will be a system for integration, translation, and transformation for addressing health disparities in sickle cell disease, and for addressing deficiencies in the current economics of our health care system, which provide an opportunity for business development.