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Table 7 Participants’ mean score regarding facilitators for DRSs

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

Category of facilitators Facilitators Mean ± SD Mean ± SD
1.Improving data quality Continuous evaluation of the data quality 4.80 ± 0.26 4.54 ± 0.23
Using data quality indicators to evaluate DRSs 4.73 ± 0.19
Continuous follow-up to complete the missing data 4.66 ± 0.12
Verification and auditing of data collected from patients 4.66 ± 0.12
Using data prevention controls 4.60 ± 0.06
Presence of a data quality auditor 4.46 ± 0.08
Homogenization of measurement units 4.26 ± 0.28
Feedback on data quality to DRS employees 4.13 ± 0.41
2.Increasing motivation and interest Giving research motivations to employees 4.53 ± 0.05 4.48 ± 0.07
Hiring interested people for DRSs 4.53 ± 0.05
Creating financial or non-financial incentives to increase people's interest in registry 4.40 ± 0.08
3.Observing ethics, data security and confidentiality Development of common and clear standards and guidelines for access to DRS data 4.60 ± 0.24 4.36 ± 0.16
Developing security measures in software 4.53 ± 0.17
Observing ethical and legal considerations related to patients in the DRS guidelines 4.40 ± 0.04
Non-disclosure of patients’ information without their consent 4.33 ± 0.03
Obtaining consent from patients to use his/her information 4.33 ± 0.03
The anonymity of reports and outputs of DRSs 4.20 ± 0.16
Development of the intellectual rights and data ownership regulations 4.13 ± 0.23
4.Proper data collection Determining the appropriate and uniform minimum data set 4.80 ± 0.52 4.28 ± 0.24
Exact definition of cases to be included in DRSs 4.53 ± 0.25
Informing data collectors/abstractors about the purpose of the data collection 4.40 ± 0.12
Omitting unnecessary data items from the defined data set 4.33 ± 0.05
Collecting data during its generation (in the routine clinical process) 4.20 ± 0.08
Collecting registry data from electronic health record system 3.93 ± 0.35
Data collection by physicians 3.80 ± 0.48
5. Using standards Using of clinical coding (terminology) standards 4.53 ± 0.25 4.28 ± 0.26
Standardization of data in DRSs 4.33 ± 0.05
Using data exchange standards to communicate with the electronic health record systems 4.00 ± 0.28
6. Improving cooperation/coordination Coordination of provincial DRS centers with the national registry program (central office) 4.60 ± 0.40 4.20 ± 0.48
Group and team collaboration between DRS stakeholders 4.33 ± 0.13
Collaboration between similar DRSs 3.66 ± 0.54
7.Using appropriate technology Appropriate software support by the IT company or technical team 4.40 ± 0.30 4.10 ± 0.17
Working with successful and famous IT vendors in the field of registry software 4.13 ± 0.03
Using a single server for multicenter DRSs 4.13 ± 0.03
Interoperability and integration of registry software with other information systems 4.06 ± 0.04
User-friendly registry software 4.00 ± 0.10
Using a single, central server to store data 3.86 ± 0.24
8.Management facilitators Continuous evaluation of DRSs 4.60 ± 0.55 4.05 ± 0.33
Increasing the awareness and skills of human resources in performing DRS-related tasks 4.40 ± 0.35
Strong scientific and executive team for the DRS 4.40 ± 0.35
Formulating accurate and transparent purposes for DRSs 4.40 ± 0.35
Developing periodic reports to evaluate the progress of DRSs 4.40 ± 0.35
Efforts to maintain staffs (for example, by proposing a research plan or raising wages) 4.33 ± 0.28
Advising and educating stakeholders in the field of DRS 4.33 ± 0.28
Data quality control training for employees 4.33 ± 0.28
Establishment of a registry secretariat in all partner universities/participants in a DRS 4.33 ± 0.28
Hiring managers with strong social relationships and the ability for consensus-building 4.33 ± 0.28
Conducting feasibility study before implementing a DRS 4.26 ± 0.21
Developing a specific organizational charts and structures for DRSs 4.20 ± 0.15
Developing a multidisciplinary team to lead DRSs 4.20 ± 0.15
Hiring managers with the appropriate background and practical experience in setting up DRSs 4.20 ± 0.15
Consensus-building of a team of experts to initiate an DRS 4.13 ± 0.08
Knowledge of the principal investigator in the field of the disease/condition that is going to be registered 4.13 ± 0.08
Determining the needs and priorities for implementing DRSs 4.13 ± 0.08
Using research project funding to fund DRSs 4.13 ± 0.08
Using ministry of health budgets for financing DRSs 4.06 ± 0.01
National meetings to transfer and share knowledge and experiences 4.06 ± 0.01
Implementing DRSs in organizations with sustainable structure and governance (such as research centers) 4.06 ± 0.01
Using scientific and updated guidelines and standards 4.06 ± 0.01
Planning to make money from DRS 4.06 ± 0.01
Reducing various costs such as using free, open source software, etc 3.93 ± 0.12
Creating an appropriate IT team to provide technical support for DRS 3.93 ± 0.12
Developing and upgrading the protocols for DRSs 3.93 ± 0.12
Developing a single, unique executive protocol at the ministry of health for all DRSs 3.93 ± 0.12
Presence of a representative of the involved participants and stakeholders in the management team of a DRS 3.93 ± 0.12
Efforts to hire staffs from various sources (such as student research centers) 3.86 ± 0.19
Increasing the reputation and credibility of the DRS (for example, gaining the support and approvals of the ministry of health) 3.86 ± 0.19
Using international guidelines as a model for developing registry protocols 3.80 ± 0.25
Personal financial independence in DRSs 3.73 ± 0.32
Connecting DRSs to the necessary clinical care and service 3.66 ± 0.39
Using provisional, training staff as a workforce 3.33 ± 0.72
Presence of the patients' representative in the meetings of the registry management committee 3.20 ± 0.85
Membership of a representative from all universities in the national disease registry committee in the ministry of health 3.20 ± 0.85
9.Increasing patients’ participation Obtaining informed consent and fully explaining the goals of patients’ participation to patients 4.06 ± 0.15 3.91 ± 0.11
Considering therapeutic benefits and patient care 3.86 ± 0.05
Paying the costs of patients' cooperation with DRSs from the registry budgets 3.86 ± 0.05