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Background In the past, many data collection systems were in operation for different HIV/AIDS projects in China. We describe the creation of a unified, web-based national HIV/AIDS information system designed to streamline data collection and facilitate data use.
Methods Integration of separate HIV/AIDS data systems was carried out in three phases. Phase 1, from January 2006 to December 2007, involved creating a set of unified data collection forms that took into account existing program needs and the reporting requirements of various international organizations. Phase 2, from January to October 2007, involved creating a web-based platform to host the integrated HIV/AIDS data collection system. Phase 3, from November to December 2007, involved pilot testing the new, integrated system prior to nationwide application.
Results Eight web-based data collection subsystems based on one platform began operation on 1 January 2008. These eight subsystems cover: (i) HIV/AIDS case reporting; (ii) HIV testing and counselling; (iii) antiretroviral treatment (ART) for adults; (iv) ART for children; (v) behavioural interventions for high-risk groups; (vi) methadone maintenance treatment; (vii) sentinel and behavioural surveillance; and (viii) local county background information. The system provides real-time data to monitor HIV testing, prevention and treatment programs across the country.
Conclusion China’s new unified, web-based HIV/AIDS information system has improved the efficiency of data collection, reporting, analysis and use, as well as data quality and security. It is a powerful tool to support policy making, program evaluation and implementation of the national HIV/AIDS program and, thus, may serve a model for other countries.
Effective responses to infectious disease epidemics depend on timely information. Data collection, data management, data analysis and data use all play crucial roles in public health responses to infectious diseases. Information systems configured to provide timely data can provide essential support for disease detection, management and control efforts.1
One major challenge facing national HIV programs is the need to coordinate and harmonize data collection efforts. In the case of complex conditions, such as HIV/AIDS, the demand for data is enormous. Government agencies need data to assess the magnitude of disease, to guide policy decisions, and to shape disease prevention, treatment and control efforts. External donors need data specific to the programs that they support. Numerous other stakeholders also need data, including non-governmental organizations (NGOs) and academic researchers. In many countries, this plurality of data needs has given rise to multiple data collection systems for disease surveillance and program monitoring and evaluation (M&E). These multiple systems most often generate data that are not standardized, making comparisons over time, across geographic areas or between programmatic areas difficult or impossible.
In China, numerous HIV/AIDS data collection systems arose to meet different data collection needs, including those of Chinese government programs and donor-funded AIDS programs and research projects. Eight national routine reporting subsystems emerged, covering:
These subsystems were managed by different technical divisions within the National Centre for AIDS/STD Control and Prevention (NCAIDS) at Chinese Centers for Disease Control and Prevention (China CDC).
Besides these national subsystems with coverage cross the country, other major AIDS projects, such as China CARES, the Global Fund China AIDS Project, China–UK AIDS Project and the World Bank 9th Health Loan Project, also collect and manage their projects’ information, which created project-based AIDS information subsystems that also overlapped with the above eight subsystems.
While these subsystems provided a wealth of data across the spectrum of HIV/AIDS programs and focus areas, the diversity of data collection sources and methodologies created many problems. With regard to data collection, duplicative requests from different subsystems generated a heavy workload for public health field staff. Inconsistent data collection methods within and across subsystems led to problems in comparing data.2 In addition, substantial amounts of data were collected but seldom analysed and rarely shared. Over time, China’s need for an integrated information system for HIV/AIDS surveillance and response became clear, and the creation of a unified, web-based, national HIV/AIDS information system was identified as a top priority.
The first major step in this direction occurred in 2005, when the China CDC instituted a web-based case-reporting system across a number of different disease areas, including HIV/AIDS.3 This system allows end users to enter case report data directly into an online system using automated forms, and it allows authorities to examine case report data in real time. In addition, the system allows users to generate automated reports that make it easier for public health staff and officials at every level to make use of data within their area of jurisdiction.
The second major step in this direction began in 2006, when the NCAIDS launched an initiative to develop a comprehensive, national, web-based HIV/AIDS information system. This system aimed to streamline data collection, data management, data analysis and data use by standardizing data collection methodologies, automating data management functions, and generating standardized statistical reports that can be readily used to guide public health efforts. The new system was launched in 2008, and has been in operation for >2 years. Here, we describe China’s new HIV/AIDS Comprehensive Response Information Management System (CRIMS) and provide a preliminary assessment of the new system.
The data unification initiative was launched in early 2006 and completed in three phases. The purpose of each phase and the steps involved are summarized in Table 1.
From January to December, 2006, a team comprised of technical officers from the NCAIDS/China CDC, the UNAIDS China Office, the WHO China Office and the US CDC Global AIDS Program in China, worked to create a set of uniform data collection questionnaires and forms. All questionnaires and forms from the eight existing national routine reporting systems were reviewed, along with questionnaires and forms from all major bilateral and international HIV/AIDS programs, including the China Integrated Program for Research on AIDS (CIPRA) funded by the US National Institutes of Health (NIH), and China’s Global Fund HIV/AIDS projects. In addition, UNGASS indicators, indicators from China’s national framework for HIV/AIDS M&E, and key indicators from the WHO HIV/AIDS Strategic Information Framework were reviewed to ensure that appropriate data would be collected to meet reporting requirements.4
After key questionnaires, forms and indicators were reviewed, data fields were selected for inclusion in the draft forms for the web-based system. Criteria for data field selection included usefulness and feasibility of data collection. Redundant information from different systems was removed. Relevant identifier fields were included in all forms. Many variables or questions that did not meet criteria for data selection were dropped during the review process to ensure a reasonable data collection workload for public health staff.
The new questionnaires and forms were pilot tested in several provinces with a significant HIV/AIDS burden, including Yunnan, Henan and Anhui. The questionnaires and forms were assessed for user-friendliness, accuracy of information provided, feasibility of operation and appropriate formatting. Several levels of review were involved, including reviews by local health workers; by CDC staff at the county, provincial and national levels; and by officials from the Ministry of Health.
The reviewed, pilot tested questionnaires and forms were then compiled into a guidance document, Information Management for Comprehensive HIV/AIDS Prevention and Control. Contents included all relevant questionnaires and forms, definitions of variables and key terms, reporting frequencies and reporting organizations for each questionnaire and form.
A standardized monthly HIV/AIDS implementation report was also designed to summarize data collected from the subsystems.
From January to October, 2007, NCAIDS staff worked with a sub-contractor, Sinosoft, Inc., to create a web-based platform to host CRIMS. This unified, web-based platform combined the eight existing subsystems, along with one new subsystem covering contextual information for each county (including demographic data); information on infrastructure development; and information on the estimated size of high-risk groups and the number of entertainment establishments. Sentinel and behavioural surveillance were combined into one single subsystem. Seven of the eight new subsystems include two main modules: original data management and summary statistics. The original data management module has different levels of authorization; users have access to the data for levels under their jurisdiction. Summary statistics consist of real-time statistics and regular (periodic) statistics. The eighth subsystem, sentinel and behavioural surveillance, includes only the original data management module.
In November and December, 2007, the new platform was pilot tested and modified based on findings from pilot testing. A user-friendly interface was optimized to make data entry and uploading fast and convenient. Automated checks were designed to ensure logical relationships between questions and variables, including automated skip patterns and connections between subsystems. For example, if an individual receives an HIV screening test, the test result first must be recorded in the client register within the HIV testing and counselling subsystem. If the HIV test result is positive, the health-care worker is automatically directed to input data required for case reporting. If the HIV test result is negative, the health-care worker is automatically directed to input whether or not the individual was provided with post-test counselling. During Phase 3, contents of the automated statistical reports were also verified using statistical software (SPSS and SAS) to ensure the accuracy of programming.
Other major AIDS projects stop to collect their own data that have the same contents with the eight new subsystems. Project officers can directly use information from the eight new subsystems for their AIDS projects.
China’s new national HIV/AIDS CRIMS began operation on 1 January 2008. This system covers all levels of the public health system, from the local level up through the central level (Figure 1).
CRIMS is composed of eight subsystems (Figure 2). These include the existing seven subsystems plus an additional subsystem that houses county level contextual information. In 2008 alone, 45 572 new HIV case cards, over 260 000 case follow-up questionnaires. 15 021 new adult ART cards and 307 paediatric ART cards, 81 130 new MMT patient cards and more than 1.7 million voluntary counselling and testing (VCT) visits were entered into the new platform.
A summary of changes to each of the eight subsystems over the course of integration is presented in Table 2.
The processes of data entry, data management, data analysis and data use were all transformed as a result of integration. Data entry was streamlined by harmonizing data collection forms, thereby reducing the number of forms staff at the local level are required to complete. Identifying information (site codes, individual unique identifiers) is now automatically entered on all data collection forms, thereby reducing errors and eliminating the need for staff to spend time manually completing forms. Because internet outages remain a challenge in some areas, the system was designed to allow for off-line data entry. Certain subsystems, including the VCT, MMT and ART subsystems, have client software used to collect data offline. Data are then uploaded to the web-based subsystem whenever the terminal users are online.
Data management was simplified through integration. Paper forms no longer need to be sent by post from the local level up to higher levels within the reporting system; rather, all data are entered directly into the web-based system and may be accessed. Variables, variable definitions, variable formats and variable codes are now standardized nationwide, facilitating data analysis and data use. It is also easy for system users to access and download datasets.
Data analysis, primarily in the form of descriptive statistics, was automated through the web-based systems integration process (Figure 3). Users at all levels of the system can generate automated reports relevant to their area of jurisdiction. This allows users at all levels of the system to generate descriptive statistical reports, regardless of computing ability. Data can also be searched or analysed across subsystems.
The creation of a unified HIV/AIDS web-based management system has significantly improved HIV/AIDS data collection, data management, data analysis and data use. The new integrated system has provided support for policymakers as well as those designing and implementing HIV surveillance, prevention, testing and treatment programs.
The new system has also had an impact on HIV/AIDS programs. First, it has provided tools to improve program implementation. For example, one challenge in China’s national MMT program was finding a way to allow MMT patients to access services at different MMT clinics instead of being required to attend a specific clinic. With the new information system in place, it is now straightforward for MMT clinic staff to access individual patient records. This practical tool has allowed for a change in policy that has helped expand program coverage to those MMT patients with more mobile treatment needs. Secondly, the new system has made the comprehensive M&E of the national HIV program possible. For example, data for China’s 2008 and 2010 UNGASS reports came primarily from CRIMS.
Integrating China’s HIV/AIDS information systems has vastly improved data quality and availability, but a number of challenges remain. First, efforts to integrate HIV/AIDS data with data from other related public health information systems, such as tuberculosis and hepatitis, could help improve both disease prevention efforts and patient outcomes. Secondly, ongoing efforts to improve data quality are necessary. Thirdly, improvements can be made with regard to the visual display of information with the addition of more user-friendly graphs and graphics. Fourthly, integration with geographic information systems (GIS) could provide a more sophisticated understanding of disease patterns and program coverage that could lead to stronger HIV/AIDS program efforts.
The development of a unified web-based HIV/AIDS information platform hosting eight subsystems is a milestone in Chinese HIV/AIDS information management. CRIMS has improved the efficiency of data collection, reporting, analysis and use, as well as data accuracy and security, and the usefulness of information generated from the platform. It ensures that relevant, timely and accurate data are available to national program leaders and managers at each level of the health-care system, and it ensures that the national program is able to meet the reporting requirements of donor projects and international agreements. This integration of AIDS information systems may also be a model for other countries.
Chinese Ministry of Health National AIDS Program (131-08-105-02); US Centers for Disease Control and Prevention, Global AIDS Program in China (Cooperative Agreement Number U62/CCU022883-04-3); US National Institutes of Health/Fogarty International Center and National Institute on Drug Abuse (5U2RTW006918-07).
The authors appreciate the contribution of the UNAIDS, the US CDC and the WHO, and thank Salil Panakadan, Zhijun Li and Pengfei Zhao for their assistance in the development of the unified web-based national HIV/AIDS information system.
Conflict of interest: None declared.