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

Area of Science:

• Health Informatics
• Public Health
• Data Management

Background:

• Disease Registry Systems (DRS) collect standardized data for specific populations and purposes.
• Identifying barriers and facilitators is essential for improving DRS effectiveness within diverse health systems.

Purpose of the Study:

• To identify and prioritize barriers and facilitators impacting Disease Registry Systems (DRS).

Main Methods:

• Conducted 13 expert interviews to identify initial barriers and facilitators.
• Developed and administered a questionnaire to 15 experts for factor prioritization.
• Prioritized factors using mean scores across four defined levels.

Main Results:

• Identified 63 barriers and 76 facilitators, categorized into 9 themes each.
• Top-ranked barriers: poor stakeholder cooperation/coordination, lack of standards, data quality issues.
• Top-ranked facilitators: improving data quality, increasing motivation/interest, observing ethics/data security/confidentiality.

Conclusions:

• Stakeholder coordination, data management, standardization, and ethical/security considerations are critical for DRS success.
• These factors require focused planning and investment by managers to ensure DRS continuation.