Health Information Management for Clinical Monitoring, Research and Quality Assurance - the Comprehensive Renal Transplant Research and Information System (CoReTRIS) Database

Abstract

Objective: The Kidney Transplant Program at the Toronto General Hospital utilizes numerous electronic health record (EHR) platforms housing patient health information that are often not coded in a systematic manner to facilitate quality assurance and research. To address this problem, the Comprehensive Renal Transplant Research and Information System (CoReTRIS) was developed. Methods/Approach: A team of multi-disciplinary professionals developed the framework and codebook for CoReTRIS, which comprises clinical outcomes, costs, and quality-of-life data elements. To create CoReTRIS, relational tables representing elements from pre- and post-transplant domains, and linked to a biological specimen repository, were developed using MS Access. Training manuals for data abstraction and entry from EHR platforms were created to ensure all procedures were performed systematically. To reduce human resource costs, trained personnel from the Multi-Organ Transplant Student Research Training Program (MOTSRTP) under healthcare staff supervision performed the majority of the data management exercises. Results: Currently, CoReTRIS comprises over 40 domains with 700 data elements. This includes data for all kidney patients transplanted since 1 Jan 2000, referred patients with end-stage renal disease since 1 Jan 2003, and biological specimen samples for all kidney transplant patients actively followed through our clinical trials unit. The training manuals have led to the development of training courses and e-learning tools. These e-learning tools provide an interactive environment with tests following each session to assess the readiness of trainees to initiate actual data abstraction exercises. A set of statistical codes developed utilizing the program Stata® were employed to perform data audits and validation checks to ensure maintenance of the quality of the databases and to produce standardized analytical datasets for ongoing and future research. Conclusion: Data analysis from CoReTRIS presented at programmatic retreats and scientific meetings is contributing to quality improvement and the knowledge base of kidney transplantation. CoReTRIS provides high quality data at minimal financial cost, thus a similar framework has wide applicability for chronic care management databases in other healthcare institutions.