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Table 3 Themes and sub-themes identifying barriers for DRSs

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

Themes Sub-themes 1 No of participants Meaning units
Management problems Resource related problems 12 40
  Organizational problems 4 10
  Insufficient awareness and education 4 7
  Steering committee-related problems 4 6
  Wrong strategic policies 4 4
  Lack of unified guidelines and protocols for standardization of DRS functions 4 7
  Rapid changes of policy makers and managers 4 6
  Problems related to registry managers 3 5
  Problems with purposes formulation 2 3
Data collection-related problems Case-finding related problems 3 5
  Restrictions of retrospective data collection from paper records 3 3
  High volume of data elements defined for DRSs 2 2
  Incompleteness of data in hospital information systems as a data source 1 1
  Failure to comply with the data collection guidelines in DRSs 1 1
  Inconsistencies in data collection from different data sources 1 1
  Non-cooperation of physicians in the process of collecting data 1 1
Poor cooperation/coordination between stakeholders Lack of coordination and cooperation of different stakeholders in a DRS 4 5
  Developing separate and parallel DRSs with different systems 4 6
  The difficulty of coordination between provincial (regional) DRSs in multicenter registries 3 5
  Limited and non-continual cooperation of physicians with DRSs 2 2
  Lack of coordination between universities and inter-sectoral cooperation 2 2
  Non-cooperation of data sources with the DRSs 2 3
Lack of motivation and interest Mandatory entry of data into the registry system by staff while on duty 1 1
  Increasing employee workload through the registry functions 1 1
  Employees' fear of changes in the work process following the implementation of a DRS 1 1
  Lack or limitation of financial incentives 1 1
  The concern of physicians about the transparency of their performance through the registration of their patients’ data 1 2
  Lack of transparency of registry benefits for participants 1 4
Technological problems Lack of technology support 5 8
  Restrictions on the data exchange between DRSs and other information systems 5 8
  Internet disruption and its low speed in Iran 2 2
  Non-use of user-friendly software in registries 2 3
Threats to ethics, data security and confidentiality Data confidentiality issues 2 2
  Lack of transparency of data ownership 2 3
  Non-backup of data stored in DRSs 1 1
Data quality-related problems Sources of data defects and errors 6 11
  Different measurement units of variables in different diagnostic and treatment centers 2 2
Lack of or non-use of standards Not using data standardization 6 11
  Lack of other registry-related standards (such as reporting standards, functions, etc.) 1 6
Limited patients’ participation Lack of patients’ participation for follow-up 4 11
  Non-cooperation of physicians in referring patients to the registries 1 3