Table 6 Participants’ mean score regarding barriers for DRSs
From: Barriers and facilitators for disease registry systems: a mixed-method study
Category of barriers | Barriers | Mean ± SD | Mean ± SD |
|---|---|---|---|
1.Poor cooperation/coordination between stakeholders | The difficulty of coordination between provincial DRSs in multicenter registries | 4.40 ± 0.10 | 4.30 ± 0.12 |
|  | Limited and non-continual cooperation of physicians with DRSs | 4.40 ± 0.10 |  |
|  | Lack of coordination between universities and inter-sectoral cooperation | 4.40 ± 0.10 |  |
|  | Developing separate and parallel DRSs with different systems | 4.33 ± 0.03 |  |
| Â | The reluctance of medical centers to cooperate with people and out-of-center DRSs | Â | Â |
|  | 4.33 ± 0.03 |  |  |
|  | Lack of coordination and cooperation of different stakeholders in a DRS | 4.13 ± 0.17 |  |
|  | Non-obligation for medical centers to cooperate with DRSs and provide data | 4.13 ± 0.17 |  |
2. Lack of or non-use of standards | Not using data standardization | 4.26 ± 0 | 4.26 ± 0 |
|  | Lack of other registry standards such as reporting standards, functions, etc | 4.26 ± 0 |  |
3. Data quality-related problems | Different measurement units of variables in different diagnostic and treatment centers | 4.26 ± 0.20 | 4.06 ± 0.17 |
|  | Missing data due to lack of past information or follow-up of patients | 4.00 ± 0.06 |  |
|  | Human errors in entering data into DRS | 3.93 ± 0.13 |  |
4.Data collection-related problems | Non-cooperation of physicians in the process of collecting data | 4.33 ± 0.29 | 4.04 ± 0.15 |
|  | Inconsistencies in data collection from different data sources | 4.13 ± 0.09 |  |
|  | Incompleteness of data in hospital information systems as a data source | 4.13 ± 0.09 |  |
|  | Unclear definition of case (inclusion and exclusion criteria) | 4.00 ± 0.04 |  |
|  | Failure to comply with the data collection guideline | 4.00 ± 0.04 |  |
|  | Restrictions of retrospective data collection from paper records | 4.00 ± 0.04 |  |
|  | The disagreement of stakeholders on identifying and defining cases | 3.86 ± 0.18 |  |
|  | High volume of data elements defined for DRSs | 3.86 ± 0.18 |  |
5.Lack of motivation and interest | Lack of transparency of registry benefits for participants | 4.06 ± 0.11 | 3.95 ± 0.30 |
|  | Lack or limitation of financial incentives | 4.46 ± 0.51 |  |
|  | The concern of physicians about the transparency of their performance through the registration of their patients’ data | 4.00 ± 0.05 |  |
|  | Increased employee workload due to the registry functions | 3.86 ± 0.09 |  |
|  | Employees' fear of changes in the work process following the implementation of DRS | 3.73 ± 0.22 |  |
|  | Mandatory entry of data into the registry system by staff while on duty | 3.60 ± 0.35 |  |
6. Threats to ethics, data security and confidentiality | Lack of specific data ownership regulations | 4.20 ± 0.28 | 3.92 ± 0.30 |
|  | Non-backup of data stored in DRSs | 4.20 ± 0.28 |  |
|  | Lack of data confidentiality and security standards in data sharing | 4.00 ± 0.08 |  |
|  | Researchers' access to patients' personal and identity information | 3.60 ± 0.32 |  |
|  | Unauthorized access to confidential and sensitive patients’ information | 3.60 ± 0.32 |  |
7.Management problems | Lack of needs assessment by ministry of health and universities to implementing DRSs | 4.40 ± 0.50 | 3.90 ± 0.29 |
|  | Lack of skilled and trained staff | 4.26 ± 0.36 |  |
|  | Manpower costs | 4.20 ± 0.30 |  |
|  | Lack of unified guideline and protocol for standardization of DRS functions | 4.20 ± 0.30 |  |
|  | Non-allocation of resources according to the priorities and necessities of the DRS in Iran | 4.06 ± 0.16 |  |
|  | Lack of long-term planning of DRSs by ministry of health and universities | 4.06 ± 0.16 |  |
|  | The dependence of DRSs on individuals (not on systems) | 4.06 ± 0.16 |  |
|  | Rapid changes of policy makers and managers | 4.06 ± 0.16 |  |
|  | Instability of staff in DRSs | 4.06 ± 0.16 |  |
|  | Insufficient knowledge of how to implement DRSs | 4.00 ± 0.10 |  |
|  | Unstable organizational structure and an appropriate steering committee for DRSs | 4.00 ± 0.10 |  |
|  | Implementing a DRS without having clients to use its results | 4.00 ± 0.10 |  |
|  | Implementing DRSs only for the purpose of using individual benefits | 4.00 ± 0.10 |  |
|  | Lack of specific budget for DRSs | 3.93 ± 0.03 |  |
|  | Server cost |  | 3.93 ± 0.03 |
|  | Lack of connection of a DRS to an essential health service | 3.86 ± 0.04 |  |
|  | Lack of evaluation of DRSs by ministry of health and universities | 3.86 ± 0.04 |  |
|  | Cost of equipment, software and hardware | 3.80 ± 0.10 |  |
|  | Not identifying the scope of DRSs by managers and investigators | 3.80 ± 0.10 |  |
|  | Non-applicability of some DRS purposes | 3.66 ± 0.24 |  |
|  | Lack of participation of various specialists in steering committees | 3.60 ± 0.30 |  |
|  | Managers' desire to implement a DRS because it is a mode | 3.40 ± 0.50 |  |
|  | Lack of continuous training workshops for DRSs | 3.33 ± 0.57 |  |
|  | Lack of familiarity of applicants for implementing DRSs with clinical and medical sciences | 3.20 ± 0.70 |  |
8.Technological problems | Restrictions on the data exchange between DRSs and other information systems | 4.46 ± 0.63 | 3.83 ± 0.38 |
|  | Lack of support of universities for providing servers for DRSs | 4.06 ± 0.23 |  |
|  | Limited technical support for the DRS by the ministry of health | 3.86 ± 0.03 |  |
|  | Lack of appropriate maintenance and IT support by IT vendors | 3.73 ± 0.10 |  |
|  | Internet disruption and its low speed in Iran | 3.53 ± 0.30 |  |
|  | Lack of user-friendly software used in registries | 3.40 ± 0.43 |  |
9.Limited patients’ participation | Non-cooperation of physicians for referring patients to the registries | 3.93 ± 0.30 | 3.63 ± 0.42 |
|  | Lack of patients’ participation for follow-up | 3.33 ± 0.30 |  |