Identifying a minimum data set as a necessity to design a web-based personal health record for patients under chronic dialysis

OBJECTIVE: Many people suffer from kidney disease, and self-management is essential in these patients. Personal health record (PHR) can be used as a tool to improve self-management in these patients. This study aimed to identify a minimum data set (MDS) of PHR in dialysis patients. METHODS: This descriptive and cross-sectional study was conducted in 2019, and national and international scientific literature entitled “Personal Health Record,” “Electronic Personal Health Record,” “Dialysis Patient Portal,” “Dialysis Health Record,” and “Dialysis Information Needs” by content analysis method was reviewed. A questionnaire with 14 items was designed to examine patients’ problems and data needs based on the review of scientific literature and web-based PHRs. Based on the patients’ survey and the review of scientific literature, a questionnaire with 114 questions was designed. Finally, with experts’ opinions, data elements were determined. RESULTS: An MDS for developing web-based PHR for patients under chronic dialysis was created with 17 data classes including demographic information, insurance information, contact information in case of emergency, information on dialysis sessions, physicians information, dialysis center information, information on individual measured values (blood pressure, blood sugar, and weight), disease history information, information on surgical procedures and operations, history of visits, allergies, vaccinations, family history, drugs, laboratory tests, diet, and education materials for the patient. CONCLUSION: In this study, an MDS was developed for a web-based PHR for dialysis patients. The use of standard data can help collect the data that is essential to improve the patient’s health and track his medical condition.