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 |