A fully integrated clinical information system to support management of end-stage renal disease - Design and implementation

End-stage renal disease (ESRD) is relatively rare, but very costly. The ESR D population in the US is elderly, over 40% have diabetes mellitus, and mos t have additional comorbid conditions. Concerns about the quality and cost of care for people with ESRD in the US prompted the Healthcare Financing Ad ministration (HCFA) to launch a demonstration project to determine whether disease management might improve care at:reduced cost. It also stimulated h ealth plans in the private sector to begin contracting with newly formed ES RD disease management organizations (DMOs). We describe the clinical information system developed by one such organizat ion, 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. D ata 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 region s in 1998 under a contract with Humana, a national health plan. Highly expe rienced, locally recruited nephrology nurses co-ordinated care and entered data. The data included standard quality indicators, performance measures a nd key outcomes, along with data on patient assessment, care management, an d 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 ha s provided comparisons of data at the regional and national levels, an inde pendent reference for auditing claims, rapid turn-around of data to drive o utcomes management, and the ability to link all components of care manageme nt. The system configuration is scalable and has functioned well across mul tiple sites of care while maintaining the privacy and security of patient d ata. Future plans include migration to an internet-based platform, adoption of h andheld devices for data entry, and development of an Internet site where p atients, their caregivers and their providers can interact. The system is d esigned to accomodate the evolving scope of disease management for ESRD, br oadening to embrace multiple comorbid conditions and increasing its focus o n prevention wellness.