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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  
  The reluctance of medical centers to cooperate with people and out-of-center DRSs   
  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