Development of minimum data set and electronic registry for hemodialysis patients management

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BackgroundThis study aimed to develop a minimum dataset and an electronic registry system for hemodialysis patients to evaluate hemodialysis patients’ treatment procedures and outcomes, conduct related research, and design therapeutic interventions.MethodsThis developmental research was performed in multiple phases, including content determination using the Delphi technique; database designing using MySQL; building a user interface using PHP; usability evaluation using the think-aloud method by 10 evaluators through a scenario consisting of 7 tasks; and finally, the system was piloted by entering the 160 patients’ paper records into the system.ResultsFollowing the CVR and CVI content validity assessment, 108 of the 118 extracted data elements (DEs) were validated. Then, using the Delphi technique, nephrologists chose 57 DEs and divided them into 4 information categories, including the patient’s clinical history, hemodialysis episodes, laboratory findings, and the outcomes of hemodialysis. The three tabs that made up the user interface were the homepage, information recording, reports, and definitions. The problems with appearance and performance were discovered using the think-aloud method, and they were then resolved. Finally, users had the opportunity to identify issues, improve the system’s capabilities, and express their satisfaction throughout the system’s three-month test period.ConclusionsThe E-hemodialysis registry was created based on knowledge gained from industrialized nations, opinions and suggestions from medical specialists, and the facilities that were accessible. Information from this system can be utilized as a starting point for evaluating the hemodialysis patients’ status, identifying problems, and making sensible decisions for the best possible planning and management of end-stage renal disease.