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 |
| Â | Organizational problems | 4 | 10 |
| Â | Insufficient awareness and education | 4 | 7 |
| Â | Steering committee-related problems | 4 | 6 |
| Â | Wrong strategic policies | 4 | 4 |
| Â | Lack of unified guidelines and protocols for standardization of DRS functions | 4 | 7 |
| Â | Rapid changes of policy makers and managers | 4 | 6 |
| Â | Problems related to registry managers | 3 | 5 |
| Â | Problems with purposes formulation | 2 | 3 |
Data collection-related problems | Case-finding related problems | 3 | 5 |
| Â | Restrictions of retrospective data collection from paper records | 3 | 3 |
| Â | High volume of data elements defined for DRSs | 2 | 2 |
| Â | Incompleteness of data in hospital information systems as a data source | 1 | 1 |
| Â | Failure to comply with the data collection guidelines in DRSs | 1 | 1 |
| Â | Inconsistencies in data collection from different data sources | 1 | 1 |
| Â | 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 |
| Â | Developing separate and parallel DRSs with different systems | 4 | 6 |
| Â | The difficulty of coordination between provincial (regional) DRSs in multicenter registries | 3 | 5 |
| Â | Limited and non-continual cooperation of physicians with DRSs | 2 | 2 |
| Â | Lack of coordination between universities and inter-sectoral cooperation | 2 | 2 |
| Â | 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 |
| Â | Increasing employee workload through the registry functions | 1 | 1 |
| Â | Employees' fear of changes in the work process following the implementation of a DRS | 1 | 1 |
| Â | 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 |
| Â | Lack of transparency of registry benefits for participants | 1 | 4 |
Technological problems | Lack of technology support | 5 | 8 |
| Â | Restrictions on the data exchange between DRSs and other information systems | 5 | 8 |
| Â | Internet disruption and its low speed in Iran | 2 | 2 |
| Â | Non-use of user-friendly software in registries | 2 | 3 |
Threats to ethics, data security and confidentiality | Data confidentiality issues | 2 | 2 |
| Â | Lack of transparency of data ownership | 2 | 3 |
| Â | Non-backup of data stored in DRSs | 1 | 1 |
Data quality-related problems | Sources of data defects and errors | 6 | 11 |
| Â | 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 |
| Â | 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 |
| Â | Non-cooperation of physicians in referring patients to the registries | 1 | 3 |