The disease registry is an important component of clinical research involving multiple health facilities. Research involving multicenters requires an electronic-based registration solution for individual data collection in real-time and continuously. The electronic-based registration also supports the ease of recording and completeness of patient data, data entered can be directly accessed and analyzed. DHIS2 has a feature to collect individual data that has the potential to be used for disease registry purposes. This system was developed to facilitate the presentation of patient health information, speed up services, and monitor and evaluate health services related to improving the quality of services.
We identified a number of disease registers that have been used in a national referral hospital. In collaboration with clinicians, we developed an electronic disease register based on their requirements and adjusted the variables to meet the clinical research purpose. The DHIS2 tracker was used to demonstrate the electronic disease register and piloting with clinical data managers at different hospitals.
The disease register that was developed includes cancer registry, epilepsy, covid-19 in children and asthma in children. The development of DHIS2 tracker begins with identify data elements and option sets from the manual recording form that was routinely used by the clinical enumerator. Further discussions were carried out to adjust clinical variables and expected descriptive analysis. Custom forms was used to display electronic registry forms to make it more dynamic and easy to understand for clinicians users. Program rules were structured to apply the logic and behavior of the questions in the logging form, such as automatic age calculations and questions that can be auto-hidden when not needed. The entered patient data can be checked and edited using the tracker capture module. The patient data can then be analyzed into several forms of visualization such as pivot tables, graphs and maps. The visualization results are then compiled into a health dashboard. All activities in this development involve clinical data manager from related disease. At the beginning of the development of the system, mentoring activities were carried out at least once a week, both offline and online. After the recording system is put into use, mentoring is continued according to stakeholder needs.
The development and use of DHIS2 as a disease register requires commitment from all health workers involved. So that there is continuity in the use of DHIS2 to support health services by utilizing data and making data-based decisions.