Designing a Minimum Data Set for Major Thalassemia Patients: Towards Electronic Personal Health Record

Introduction: In modern medicine, large amounts of data are produced.However, there is always a gap between their collection and their understandingand interpretation. In this way, minimal data sets are prepared. Thalassemiamajor is a chronic genetic disorder of the blood and the most common geneticdisorder in the world. Thus, the purpose of this study was to define a set forpersonal health of patients with major thalassemia.Methods: This present applied research was done descriptively in a cross-sectionalmanner by Delphi method. To determine the dataset, the manual health records ofthalassemia major patients were first evaluated based on the standard paper forms ofthe Ministry of Health, and the data required were collected according to thechecklist. The questionnaire was first reviewed by a team of six experts in the field.Its content validity was determined by the team and its reliability by Cronbach s alphaas 96%. Then, a researcher-made questionnaire was prepared and surveyed among113 experts on blood and oncology specialists around the country (Iran).Results: from the 126 information element data surveyed, 117 IEDs were identifiedas the main elements with the agreement of more than 75% in the range of high andvery high, while nine elements with the agreement of less than 50% in the range oflow and very low were excluded from the elements list of personal health records ofthalassemia patients. The information element data with the agreement of 50 to 75 inthe range of moderate to high was not found in the survey. Finally, the minimum dataset of individual health records of patients with thalassemia major was provided in 9groups of demographic information, health history information, assessmentinformation, laboratory data, drug information, blood transfusion, physicalexaminations, immunization (vaccination) and dental care.Conclusion: In this study, the data elements were defined for personal health recordof thalassemia patients. These data elements are considered as an appropriate data setfor inclusion in the manual systems and electronic medical records and based on thepatients needs can be changed to be used as a national document.

کلیدواژه ها:

Minimum Data Sets ، Data Elements ، Personal Health Record ، Electronic Personal Health Record ، Thalassemia