This section describes the NTSRU role in the trachoma surveillance program including the transfer of data, analysis of data and the associated privacy, data confidentiality and system security provided.
3.9.1 The processes for transfer, entry, editing, storage and back up of the dataIn the first year that trachoma surveillance data were collected, staff (either local or regional) would enter data from the paper forms (locally developed paper forms) used during screening into a software program of choice (this varied from Microsoft Word or Excel to free text emails) and email to the regional unit (if it was entered by local community health staff) who would then forward the data to the jurisdictional health department who would then forward to the NTSRU (or directly from AHCSA to the NTSRU in the case of SA). The NTSRU would then enter the jurisdictional data into their database.
The NTSRU, which at this time was operated by CERA found this to be a very inefficient method as there were numerous data gaps that required individual follow up with the units. It was decided that from the second year onwards CERA would provide each jurisdiction with the Microsoft Access database via email which was then forwarded to the units undertaking the surveillance activities. It became the responsibilities of the health departments and the AHCSA to ensure the data were complete and accurate before sending it to NTSRU. The double data entry process is common to all states/territories.
Regions have difficulty providing the data to the NTSRU in a timely fashion due to other competing priorities as well as the difficulties associated with gathering some of the data e.g. data required for the denominators. SA lags behind in submitting data predominately due to a lack of resources (only one person dedicated to surveillance activities whose role includes data collection, entry and transfer). Representatives involved in trachoma surveillance activities commented that when issues with the data are identified at the time of data entry (which may be several months after the screening activity) it can be a time consuming process contacting the people who conducted the screening to see if the error can be corrected or if missing data were actually available. It was also commented that there is a high turnover of staff which sometimes makes missing data impossible to regather.
It was also noted that not all data that are collected on trachoma screening are entered into the NTSRU database, due to resource issues or to screening being undertaken outside the screening period (e.g. not in two week period when WA undertakes trachoma screening). All jurisdictions keep a copy of the surveillance data entered into the database which is sent to the NTSRU. The backup of the NTSRU database occurs as part of the routine backup that occurs in the units or jurisdiction health department. The NTSRU database held by the NTSRU is backed up at the end of each night by the CERA IT department. top of page
Figure 3.10 illustrates the data flow processes from regional health services, to jurisdiction level authorities to the NTSRU that make up the national trachoma surveillance system.
Figure 3.10: Flow diagram of national data collection process
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3.9.2 The processes for analysing and disseminating the dataMost surveillance teams commented that meeting the deadline for data submission was always an issue due to resource levels. The NTSRU also made the comment that they often received the data after the deadline which required them to work through the Christmas/New Year period analysing the data and preparing the data tables/figures and text for the annual trachoma surveillance report. The NTSRU was not sure about the extent to which the national data are used at the jurisdictional or local levels, or whether it is used at all.
The NTSRU does provide the jurisdictions with draft tables/figures to ensure that they are confident that the data fairly reflect what has been submitted before drafting the annual surveillance report. Once the report is drafted it is sent to the National Trachoma Reference Group for review and comment. The NTSRU make the changes necessary to address Reference Group’s comments and submit the final report to the DoHA.
3.9.3 The processes for ensuring privacy, data confidentiality and system securityThe data entered into the NTSRU database are at aggregate level only and therefore not identifiable to a person, only to a community. The data are available at three levels including community, region and jurisdiction. Each jurisdiction can only have access to their own data i.e. SA cannot access WA data. There are patient level identifiable data held by some community health services and/or screening teams (i.e. at local level only). This information is needed for follow-up and treatment purposes. The information at the local communities is held under privacy conditions of that health service.
There is limited system security on the information held in the NTSRU database at the jurisdiction, unit level (where data is entered) or community level. Paper forms may be faxed or posted (normal mail) to the unit for data entry. The NTSRU database is sent from the units to the jurisdiction health department to the NTSRU via an email with the database attached and not password protected. Once the data are collated at the NTSRU, the resultant database is stored in a designated folder that can only be accessed by staff working in the NTSRU.
3.9.4 Resources for national collection, processing and reportingThe national collection, processing and reporting of trachoma surveillance data is funded by the Australian Government. In 2006, CERA was awarded the NTSRU contract for three years at $130,000 per annum to collect, analyse and report on trachoma surveillance data. In 2009, with an extension provided to CERA for one year, CERA subcontracted the role of the NTSRU to MEGA. MEGA negotiated additional funding with DoHA and received approximately $170,000 to produce the 2009 Trachoma surveillance report.
CERA advised the evaluation team that while they performed the role of the NTSRU their reported personal costs per year were made up of:
- a full-time project officer (1.0 FTE);
- a full-time data analyst and a full-time database manager for six months of the year (i.e. equivalent to 1.0 FTE);
- part time administrative support throughout the year (estimated at 0.1 FTE); and
- a senior person for three months of the year who is required to oversee the project, assist in the report writing and review and be involved in the administration of the contract (estimated at 0.2 FTE).
MEGA has only recently taken over the contract and were in the process of receiving data from jurisdictions, at the time of consultation, so they were unable to comment whether the assigned staff were sufficient to perform the role of the NTSRU. MEGA expected that the $170,000 per annum was sufficient to perform the role of the NTSRU without any changes to the process i.e. using the developed database. MEGA did not consider the current database sufficient and suggested a new database should be developed that is a secure web-based database that allows jurisdictions to enter data securely and produce the required reports. top of page