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.
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.