End-stage renal disease (ESRD) is relatively rare, but very costly. The ESRD population in the US is elderly, over 40% have diabetes mellitus, and most have additional comorbid conditions. Concerns about the quality and cost of care for people with ESRD in the US prompted the Healthcare Financing Administration (HCFA) to launch a demonstration project to determine whether disease management might improve care at reduced cost. It also stimulated health plans in the private sector to begin contracting with newly formed ESRD disease management organizations (DMOs). We describe the clinical information system developed by one such organization, RMS Disease Management, an affiliate of Baxter Healthcare Corporation. The system was designed to function within disparate medical care delivery systems and regions, without adding work for providers or health plans. A point-of-care system was implemented using a client server configuration. Data were entered on laptops and uploaded over high-speed lines to a central site. The system was developed over 14 months and implemented in 12 regions in 1998 under a contract with Humana, a national health plan. Highly experienced, locally recruited nephrology nurses co-ordinated care and entered data. The data included standard quality indicators, performance measures and key outcomes, along with data on patient assessment, care management, and comorbid conditions. We have compiled 35 000 months of patient care experience in the past three years, and entered 4000 patients with ESRD into the program. The system has provided comparisons of data at the regional and national levels, an independent reference for auditing claims, rapid turn-around of data to drive outcomes management, and the ability to link all components of care management. The system configuration is scalable and has functioned well across multiple sites of care while maintaining the privacy and security of patient data. Future plans include migration to an internet-based platform, adoption of hand-held devices for data entry, and development of an Internet site where patients, their caregivers and their providers can interact. The system is designed to accomodate the evolving scope of disease management for ESRD, broadening to embrace multiple comorbid conditions and increasing its focus on prevention wellness.
