Table 4 Themes and sub-themes identifying facilitators for DRSs
From: Barriers and facilitators for disease registry systems: a mixed-method study
Themes | Sub-theme1 | No of participants | Meaning units |
|---|---|---|---|
Management facilitators | Appropriate resource management | 13 | 40 |
| Â | Increasing awareness and education | 8 | 19 |
| Â | Organizational facilitators | 8 | 19 |
| Â | Formation of scientific and executive teams | 7 | 14 |
| Â | Establishing registry guidelines | 5 | 8 |
| Â | Appropriate composition of the steering committee members | 5 | 5 |
| Â | Qualified managers | 4 | 7 |
| Â | Understanding the purpose of DRSs | 4 | 5 |
| Â | Evaluation of DRS | 2 | 5 |
| Â | Conducting feasibility study before implementing a DRS | 1 | 1 |
Proper data collection | Exact definition of cases to be included in DRSs | 6 | 7 |
| Â | Appropriate data set (minimum data set) | 5 | 8 |
| Â | Collecting registry data from electronic health record system | 4 | 4 |
| Â | Collecting data during its generation (in the routine clinical process) | 2 | 5 |
| Â | Hiring appropriate data collectors | 2 | 2 |
Using appropriate technology | Interoperability and integration of registry software with other information systems | 8 | 10 |
| Â | Providing appropriate software | 4 | 8 |
| Â | Working with successful and famous IT vendors in the field of registry software | 2 | 2 |
| Â | Proper data storage and backup | 2 | 2 |
Observing ethics, data security and confidentiality | Developing legal guidelines | 4 | 5 |
|  | Observing patients’ data confidentiality | 4 | 8 |
| Â | Developing security measures in software | 2 | 2 |
Improving data quality | Monitoring and evaluating data quality | 9 | 29 |
| Â | Preventive n measures against data errors | 4 | 4 |
| Â | Continuous follow-up to complete the missing data | 2 | 3 |
Using standards | Standardization of data in DRSs | 4 | 4 |
| Â | Using clinical coding (terminology) standards | 1 | 1 |
| Â | Using data exchange standards to communicate with the electronic health record systems | 1 | 1 |
Improving cooperation/coordination | Cooperation and coordination between registries | 4 | 5 |
| Â | Group and team collaboration between DRS stakeholders | 4 | 4 |
Increasing motivation and interest | Hiring interested people for DRSs | 4 | 4 |
| Â | Taking a variety of measures to increase interest and motivation | 3 | 7 |
Increasing patients’ participation | Attempts to attract patients’ participation | 7 | 10 |
|  | Obtaining informed consent and fully explaining the goals of patients’ participation to patients | 3 | 3 |