3.11 Data-Collection Methods and Tools

Data gathering involves the use of appropriate recording forms. The data will provide the opportunity to measure the programme objectives, collect numbers of cases and help to determine trends. Once a decision is made regarding the data variables to be collected, an abstraction form (see Appendix G) can be created.

Paper-based data collection

For many years, data for congenital anomalies surveillance have been collected and processed using either a predetermined list (checkbox) format or the recording of verbatim descriptions on paper. These data collection methods are still used widely for vital registration and various surveillance and research purposes. Paper-based data collection can be cost effective, but the process can require more time from data collection to analysis. It is also more prone to errors than electronic data collection because the data are first collected in a paper form and then transcribed into an electronic format for analysis (22-24). Nevertheless, well-structured, paper-based forms are often still used in low-resource settings for collecting data on congenital anomalies.

Electronic data collection

An alternative to paper-based data collection is electronic data collection. Gradually, data-collection methods have evolved from manual, paper-based formats to electronic formats. Improving electronic surveillance programmes can be a long and costly process that requires regular update of a system’s hardware and software to maintain a high level of security and data quality. The availability of electronic data collection will depend on the resources of each country. The ideal collection tool allows data to be collected, transmitted securely to a data-management centre for storage and analysis, and retrieved, processed or analysed when necessary. In the last few decades, the evolution of technology has significantly improved the options for potential electronic data-collection tools. Internet advances have allowed web-based reporting to progress gradually into real-time reporting (25). The more recently introduced use of laptops, tablets and smart phones provides additional options for data collection. Because of the variability in access to, use of and resources for electronic systems, each country will need to determine which method best fits its needs.

Data collection using smart phones or tablets

With the growing availability of smart phones and tablets in countries whose populations are predominantly middle and low income, their use as part of a congenital anomaly surveillance programme may improve the accuracy of data collection, and reduce the time required for – and cost of – data transmission and retrieval. Users of smart phones and tablets can capture and transmit pictures, and may have access to databases of clinical information, including photographs to assist with differential diagnosis. Furthermore, the use of these mobile devices can be a novel, simple, efficient and instructive approach to the collection of data. The larger-sized tablets can also facilitate data entry. The use of these technologies could offer great potential for encouraging motivated personnel to contribute data to central databases using their mobile devices; however, such devices can easily be lost or stolen, so it is essential that they are programmed to encrypt all data, to ensure the privacy and security of information collected by the system