Implementation of a registry for quality improvement

Presentation Crohns’ Disease and ulcerative colitis, or Inflammatory Bowel Disease (IBD), are rare in the pediatric population. Thus, conducting research centered on improving the quality of pediatric IBD care can be challenging for individual pediatric gastroenterology centers. By pooling data and sharing results across 35 care centers nationally, the ImproveCareNow network provides the opportunity for conducting quality improvement (QI) research aimed at improving care and outcomes for pediatric patients with IBD and their families [1]. The network serves as a platform for innovation and the establishment of evidencebased practices for IBD care. ImproveCareNow includes a registry database for clinical care, QI and research; a program to teach QI to each site’s QI team; and tools for QI interventions. The presentation at the Academy for Healthcare Improvement Methods meeting demonstrated how a registry can be a vital part of QI and QI research. The ImproveCareNow network uses the Model for Improvement to provide more reliable, pro-active care to pediatric patients with IBD [2]. Continuous improvement activities include examining registry data through detailed reports and acting appropriately based on these data. The centers receive monthly performance reports on 15 key clinical measures, a data quality report, and two population management reports. Control charts, benchmarking data, and care stratification data allow clinicians to identify high-risk patients and drill down to the patient level of analysis. The network also provides QI education and support, including monthly webinars, twice-yearly in-person learning sessions, and tools for effective system redesign. Network staff includes the network, scientific, and project directors, project manager, project coordinators, and QI consultants. Each center has its own QI team (physician leader, nurse leader, and improvement coordinator) that enrolls patients, enters data collected for each visit into a web-based database, and carries out QI activities to improve the site’s care delivery system. The network has demonstrated significant improvements in IBD remission rates, with approximately 75% of patients in remission in 2011 compared to 50% of patients in remission in 2007. The network recently received funding from the Agency for Healthcare Research and Quality (AHRQ) to enhance its capacity. Funding will facilitate the roll-out of innovative informatics techniques to automate data transfer from the electronic health record directly to the registry, which will eliminate the need for manual data entry. Automation will also improve data collection for QI activities, population management procedures, pre-visit planning, patientreported outcomes, comparative effectiveness research, and research focused on effectiveness of new biological agents to treat IBD. These informatics enhancements may reduce the time and personnel costs for the new centers anticipated to join a planned, larger sustainable network across 170 centers nationwide with over 50,000 patients. ImproveCareNow also received additional funding to create a Chronic Care Collaborative Network or C3N. The overall aim is to bring together stakeholders with the shared goal of improving patient self-management, clinical practice, and disease outcomes through innovative use of information technology and social media. Studying the value of the network, or how well it achieves better outcomes at lower costs, and conducting comparative effectiveness research are major priorities as the network moves toward becoming a C3N.