Barriers and facilitators for disease registry systems: a mixed-method study

BACKGROUND: A Disease Registry System (DRS) is a system that collects standard data on a specific disease with an organized method for specific purposes in a population. Barriers and facilitators for DRSs are different according to the health system of each country, and identifying these factors is necessary to improve DRSs, so the purpose of this study was to identify and prioritize these factors. METHODS: First, by conducting 13 interviews with DRS specialists, barriers and facilitators for DRSs were identified and then, a questionnaire was developed to prioritize these factors. Then, 15 experts answered the questionnaires. We prioritized these factors based on the mean of scores in four levels including first priority (3.76–5), second priority (2.51–3.75), third priority (1.26–2.50), and the fourth priority (1–1.25). RESULTS: At first, 139 unique codes (63 barriers and 76 facilitators) were extracted from the interviews. We classified barriers into 9 themes, including management problems (24 codes), data collection-related problems (8 codes), poor cooperation/coordination (7 codes), technological problems and lack of motivation/interest (6 codes for each), threats to ethics/data security/confidentiality (5 codes), data quality-related problems (3 codes), limited patients’ participation and lack of or non-use of standards (2 codes for each). We also classified facilitators into 9 themes including management facilitators (36 codes), improving data quality (8 codes), proper data collection and observing ethics/data security/confidentiality (7 codes for each), appropriate technology (6 codes), increasing patients’ participation, increasing motivation/interest, improving cooperation/coordination, and the use of standards (3 codes for each). The first three ranked barriers based on mean scores included poor stakeholder cooperation/coordination (4.30), lack of standards (4.26), and data quality-related problems (4.06). The first three ranked facilitators included improving data quality (4.54), increasing motivation/interest (4.48), and observing ethics/data security/confidentiality (4.36). CONCLUSION: Stakeholders’ coordination, proper data management, standardization and observing ethics, security/confidentiality are the most important areas for planning and investment that managers must consider for the continuation and success of DRSs. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s12911-022-01840-7.