Appendix F
ICT Considerations to Support PEPFAR Activities

Ronaldo Lima, M.Sc.

International AIDS Vaccine Initiative

GENERAL CONSIDERATIONS TOWARD IMPLEMENTING ICT IN DEVELOPING COUNTRIES

Information and communication technologies (ICTs) are critical to evaluate and analyze clinical information, as well as to improve general access to information. ICTs also hold great potential for narrowing the information gap faced by health care professionals. Health professionals not only can read many of the latest medical journals on-line, but they can also communicate directly with other professionals from anywhere in the world (Storey, 1999). Access to electronic libraries and specialized databases, phone and e-mail communication, discussion groups, video and web conference, and distance learning are some examples of what ICT tools can provide. Thus, ICTs offer potentially powerful tools to improve health, contribute to poverty elimination and speed up the process of human development.

What Is an ICT?

ICTs include a broad spectrum of communication technologies from radio, film, television, press, telephone, and Internet to more participatory forms such as theater, video, or storytelling. “New” ICTs tend to focus on the electronic or digital end of the spectrum such as e-mail, the Internet, mobile phones, and digital (video) cameras (Chetley, 2001).



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Healers Abroad: Americans Responding to the Human Resource Crisis in HIV/AIDS Appendix F ICT Considerations to Support PEPFAR Activities Ronaldo Lima, M.Sc. International AIDS Vaccine Initiative GENERAL CONSIDERATIONS TOWARD IMPLEMENTING ICT IN DEVELOPING COUNTRIES Information and communication technologies (ICTs) are critical to evaluate and analyze clinical information, as well as to improve general access to information. ICTs also hold great potential for narrowing the information gap faced by health care professionals. Health professionals not only can read many of the latest medical journals on-line, but they can also communicate directly with other professionals from anywhere in the world (Storey, 1999). Access to electronic libraries and specialized databases, phone and e-mail communication, discussion groups, video and web conference, and distance learning are some examples of what ICT tools can provide. Thus, ICTs offer potentially powerful tools to improve health, contribute to poverty elimination and speed up the process of human development. What Is an ICT? ICTs include a broad spectrum of communication technologies from radio, film, television, press, telephone, and Internet to more participatory forms such as theater, video, or storytelling. “New” ICTs tend to focus on the electronic or digital end of the spectrum such as e-mail, the Internet, mobile phones, and digital (video) cameras (Chetley, 2001).

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Healers Abroad: Americans Responding to the Human Resource Crisis in HIV/AIDS Important Key Points to Consider: Communication, not technology, should be the central concern. Strong health systems and other basic services are essential for effective use of ICTs. Increased capacity to access, organize, repackage, and use information effectively is a major priority. Local ownership, participation, and content improve the relevance of ICT activities. ICTs should complement other communication work and be integrated into broader programs. It is useful to distinguish between the parts of information and communication technology by looking at the: technology itself, information that the technology helps to convey, and communication process that the technology is meant to facilitate and through which the information is meant to flow. An issue that has been discussed in the past few years and is also a factor that drives the technological push is the concept of a “digital divide.” The G-8 Digital Opportunity Taskforce (DOT Force) defines it as “unequal possibilities to access and contribute to information, knowledge, and networks as well as to benefit from the development enhancing capabilities of ICT”(Chetley, 2001). The digital divide is an integral part of a much broader and more intractable “development divide.” The likelihood that people in low-income countries can improve their life chances is often sharply limited not only by their lack of access to modern means of communication and sources of information, but also by a complex network of constraints ranging from unresolved problems of poverty and injustice in their own societies (Alcantara, 2001). To a very large degree, low-income countries depend on foreign institutions and actors to create both an adequate telecommunications infrastructure and a regulatory framework that is progressive and fair. Development assistance is crucial in this regard. The effort is likely to be more effective if it takes place within the context of national ICT strategies, which make explicit the need to adapt available technical and economic options to the needs of specific countries. These strategies should also provide a framework for better national coordination of many disparate efforts, by NGOs and others, to use ICTs to improve public administration and social services, and to support democracy in developing countries (Alcantara, 2001).

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Healers Abroad: Americans Responding to the Human Resource Crisis in HIV/AIDS However, few projects monitor and evaluate ICT outcomes, especially local impact. Where ICT evaluation has been carried out, for example with telecentres in Latin America and the Caribbean, results tend to be used by external donors, rather than by the people involved (Chetley, 2001; Delgadillo and Borja, 1999). The Economic Commission for Africa describes health-related ICT approaches in Africa as “islands of donor-supported projects that have little impact on the growing health crisis because they often prove too costly to be replicable.” It says an African-driven approach could lead to more appropriate interventions to meet the continent’s needs (Chetley, 2001). Some lessons can be drawn about how to increase the relevance of ICTs as tools for better health and development. These include the need to (Chetley, 2001): strengthen and build upon basic systems and infrastructure; invest heavily in strengthening local human resources and capacity; focus on community-led initiatives that use relevant local content; involve women in planning and use; encourage long-term planning and policies; seek cooperative partnerships; combine old and new technologies. A key to strengthening health and other social systems is to improve the skills of the people within those systems. Increased effort is going into improving information technology skills. But there is also a need to improve information management, repackaging, and communication skills, as well as building basic organizational capacity. This means making a significant time and resource commitment to invest in training and in “understanding people’s problems before applying technology to solve them” (Chetley, 2001; Peizer, 2000). A U.S. Peace Corps project in Gambia found the process of ensuring sustainability was “more difficult and time consuming than bringing in the actual hardware.” The lesson learned was that development “is done by building the human resource base, and ensuring that the community feels included every step of the way” (Chetley, 2001; Soh, 2001). More attention needs to be paid to innovative ways of applying ICTs to the specific information needs of communities and local groups. That includes focusing on building local skills to encourage the process of local appropriation and reinforcing traditional information communication networks (Chetley, 2001). It is important to keep an open mind about the kinds of ICTs that are likely to be most appropriate for these purposes. There is a tendency at present to center discussion of information and communications technolo-

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Healers Abroad: Americans Responding to the Human Resource Crisis in HIV/AIDS gies around the Internet and to channel development assistance largely toward facilitating access to it. But cutting-edge applications are not always what people need most. In some cases, Internet use may prove too expensive or too difficult for local people to maintain, and thus be unsustainable. And in others, the Internet is simply not the best medium for supporting local socioeconomic and political progress (Alcantara, 2001). When designing ICT programs in developing countries, several constraints must be explicitly taken into account. Thus, at the international level, discussion of possibilities to use the Internet for improving trade and employment opportunities in low-income countries must be accompanied by a frank evaluation of impediments associated with the current global financial and trade situation. If the surrounding context for proposed innovation is not sufficiently analyzed, and if remedies for pressing economic problems are not addressed, many well-meaning efforts will have short lives and minimal results (Alcantara, 2001). ICT IN THE CONTEXT OF THE PEPFAR INITIATIVE Recent studies have shown the feasibility of treating HIV/AIDS in developing countries. ICT systems can be effectively used to track clinical outcomes, laboratory tests, and drug supplies, and create reports for funding agencies. Development and evaluation of practical, low cost clinical information systems should be strongly considered when rolling out HIV treatment in developing countries. However, utilizing ICTs in some developing countries is challenging, especially due to the lack of telecommunication infrastructure, which is considered a barrier to successful HIV treatment programs in resource-constrained settings. Different approaches can be implemented for managing clinical and laboratory information in developing countries. In the context of the PEPFAR initiative, ICT can support workforce expansion, including patient screening and rapid assessment, diagnostic tools, ARV management, community outreach, patient tracking, demographic surveys, distance learning, etc. This is, in fact, a wide spectrum of applications, and some priorities have to be set in order to make it feasible and cost-effective, keeping in mind that both local professionals as well as professionals sent from abroad to work on this initiative should benefit from ICT tools that will be put in place. Access to the Internet and bandwidth in several developing countries, especially in Africa, are limited and expensive, compared to the rates charged in developed countries. This is mainly attributable to the lack of local resources and reliable telecommunication networks. Connection to the Internet is established through some available technologies that use either wired links, such as dial-up and leased lines (which are not reliable in

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Healers Abroad: Americans Responding to the Human Resource Crisis in HIV/AIDS most of the African countries) or wireless links, such as satellite, radio links, or Wi-Fi. Wireless links and mobile phones have been widely used in African countries, as they do not need to rely on the local wired telephone network. Additional difficulties often relate to unreliable electrical infrastructure that may render a site without electrical power for five or more hours every day. Some rural areas in Uganda, for instance, have power outages twice a day. Generators or power supplies have to be implemented at the sites to assure that power will be available for the IT equipment as well as for the freezers that store blood samples, when applicable. Security measures have also to be taken due to the sensitive nature of the data and to ensure confidentiality of people living with HIV/AIDS. A comprehensive data backup and disaster recovery plan have to be in place to restore system information in case of loss of the primary data. One of the major challenges of the PEPFAR initiative is that it includes several countries with different realities regarding culture, available resources, and technology infrastructure. It is clear that there is not a unique solution that can be applied for all PEPFAR countries, as several barriers and difficulties have to be overcome in order to implement a site-specific IT infrastructure. The approaches, solutions, and tools have to be adapted to each reality in order to make a wise use of the PEPFAR funds as well as each country’s resources. Many countries in sub-Saharan Africa, for instance, present a unique set of difficulties and barriers to effective ICT implementation. Perhaps the foremost obstacle is the lack of a sufficient and reliable telecommunication infrastructure. This often forces applications that require consistent connectivity to incur high fees to bypass in-country networks and local telecom connections that fail frequently because of inadequate maintenance and mismanagement. Other problems arise from government monopolies and excessive regulation, as in Kenya, where radio frequency and satellite licensing formalities can delay solution implementations by months or years. Kenya and other African countries currently route out-of-country Internet traffic through a central government monopoly, which slows down transmissions considerably. Government bureaucracy in general is often slow, and new technologies are constantly prevented from adoption because local authorities fail to “approve” new technologies in a timely manner. The UN organizations, the U.S. Embassy, some NGOs, and most private banks have special license to uplink in Kenya, by-passing the government Internet provider. In places where Internet access and bandwidth are not widely available, or not cheap, standalone systems can be implemented to avoid real-time data transmission. However, some aspects have to be taken into account:

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Healers Abroad: Americans Responding to the Human Resource Crisis in HIV/AIDS Is there any interest to have data from all PEPFAR countries in a central database in the United States, for instance? If so, is there a need for readily access to the data generated at the remote sites? How often should the data be updated? How many different sites (health centers, hospitals and clinics) will be running ICT systems? Do they need to be integrated or will they run standalone systems and databases? Answers to these questions lead to different ICT approaches as well as different implementation costs. It is true that in some locations, it is possible to establish strategic partnerships with local organizations, hospitals, or universities in order to share IT infrastructure, reducing costs while at the same time preserving data privacy. Nowadays, standalone systems without communication with central databases or integration with counterpart systems do not accomplish much. When data has to be transferred to central databases, different offline solutions can be used, depending on technologies and bandwidth available, as well as cost and service reliability. In this case, data can be stored in local databases and data updates are transferred to central databases during off-hours, for instance. This is a wise and cost effective way to implement ICT systems in resource-constrained settings. Other approaches use online systems across the Internet (web-based systems or client-server applications) or through virtual private networks. The advantages of online systems are: they allow for swift data acquisition and reliable data transfer to the central databases; they allow scientists to access clinical data faster; they prevent blood samples and Case Report Forms from having to be physically transported from rural areas to the main cities for data entry; they allow a laboratory to process lab exams more rapidly and confirm sample identity; they give local professionals an opportunity to exchange information quickly and to be up-to-date on research studies and news related to the field study; and they also increase the local capacity of the sites. Staff at clinical sites also benefit from access to the latest research information on the Internet, e-mail communication, and real-time clinical research data. It also helps to reduce the isolation of researchers and professionals working in the field by enabling them to be in constant contact with other professionals and exchange information and results faster. Judicious ICT implementation allows for swift data processing and assures that valuable and accurate information will be available to health professionals, so that they can make critical decisions in a timely fashion, especially those related to serious adverse events (Lima et al., 2004), when applicable.

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Healers Abroad: Americans Responding to the Human Resource Crisis in HIV/AIDS Investing in developing country’s ICT infrastructure has important externalities that benefit local communities and economies by increasing the demand for ICT-related services, facilitating the training of individuals in computers and networking, as well as increasing their ICT capacity for use in other development initiatives. Vital to finding solutions for disparate sites are detailed assessments that take into account both the needs of the prospective site and the local and national climate for ICT. For instance, it would be ill-advised to install a system that could not be supported by local talent. This is often successfully countered by providing additional training and support to otherwise capable IT consultants and, when necessary, assistance may be provided from abroad, particularly from U.S. participants of the PEPFAR initiative. Finally, conducting clinical trials in resource-constrained settings almost always presents challenges of getting appropriate technology to remote sites quickly, accelerating slow medical panels in granting regulatory approval, when applicable, and assuring that proper steps are taken to protect patient privacy and site security. These technologies, while sometimes challenging and difficult to implement, are central to coordinate the efforts of the PEPFAR initiative. The following sections provide some examples of information systems to support HIV treatment in developing countries (Fraser et al., 2004). Stand Alone Databases The Brazilian public health system currently delivers antiretroviral treatment to more than 148,000 patients—by far the largest group in the developing world. The “Computerized System for the Control of Drug Logistics (SICLOM)” (Veloso et al., 2000) is an Internet based drug management program developed to support treatment and is considered a “key factor helping to overcome logistical challenges to delivery of antiretroviral treatment in Brazil.” It connects to a central server to update its records. The Mosoriot medical record in Kenya has been heavily used for general medical care in one hospital for more than 2 years and was recently extended to support HIV treatment at Moi University. It was developed using Microsoft Access; data are entered from a paper record. A web-based version is under development. The Children’s Hospital in Lilongwe, Malawi, has made heavy use of a touch-screen medical record system for more than 2 years. Developed by Gerry Douglas, this system runs on a local network and is built using Microsoft SQL server and Visual Basic. Doctors, nurses, and other staff enter all data, including drug orders. It is being extended to collect data on HIV patients. The Cuban health ministry has a Microsoft Access database system

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Healers Abroad: Americans Responding to the Human Resource Crisis in HIV/AIDS called SIDATRAT that registers general patient data, clinical data, opportunistic infections, staging, viral load and CD4 cell count, treatment, side effects, drug resistance, and drug adherence. It includes the more than 5,000 people diagnosed with HIV in Cuba since 1986. A team at the U.S. Department of Health and Human Services led by John Milberg has developed the Careware system (using Microsoft Access). It provides comprehensive tools for tracking HIV patients and their treatment. Currently used in more than 300 U.S. health centers and hospitals, it was deployed in Uganda in October 2003. An internet accessible version is under development. Software is available free at http://hab.hrsa.gov/careware. FUCHIA was developed by Epicentre, the epidemiology group of Médecins Sans Frontières, to support their HIV treatment projects. It supports clinical care and long term follow up of patients, including scheduling of visits, and includes data on drugs and certain investigations and generates some reports. It was developed using Microsoft Access and the Delphi programming language, and the software is available free at www.epicentre.msf.org. Internet-Based Medical Record Systems The PIH-EMR system was created to support the management of drug resistant tuberculosis in Peru. This system was built using the Linux operating system, Apache web server, Tomcat Java Servlet engine, and Oracle database. It supports clinical care, logistics such as assessment of drug requirements, and research studies. Heavily used for more than 2 years, most data are entered from paper forms, with nurse entry of drug orders now implemented in some sites. The HIV-EMR is an information system and medical record to support HIV treatment in rural Haiti. The central database is hosted on a server in Boston, Massachusetts. Clinical data forms include demographic data, clinical assessment, laboratory investigations, and social circumstances. The system includes a library of web page analyses, developed for a related project, that simplify searches for patient groups based on characteristics such as age, drug regimen, and laboratory results. Other pages generate graphs and tables and allow data to be downloaded to statistical analysis packages. More information can be found at http://bmj.com/cgi/content/full/329/7475/1142. Voxiva developed an application named Alerta that enables health officials to conduct real-time disease surveillance and rapidly respond to disease outbreaks, even in the most remote regions of the world where access to modern communications devices is limited. Alerta is a solution that combines the Internet and the telephone to extend the benefits of

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Healers Abroad: Americans Responding to the Human Resource Crisis in HIV/AIDS software applications to people without access to the Internet. The solution includes a web site for authorized users, telephone access and data entry, and a database that stores data submitted by both phone and web. The system is operational 24 hours a day, 7 days a week. More information can be found at www.voxiva.net. The Brazilian STD/AIDS Programme has developed the “System of Control of Laboratory Exams (SISCEL)” (Lima et al., 2000) to take into account the needs of the Brazilian Network of Public Health Laboratories, which carries out CD4+/CD8+ count and viral load exams in 94 health centers throughout the country. SISCEL links all laboratories via Internet and is meant to manage, process, follow up, and analyze its CD4 and viral load test results, as well as to optimize the exam-requesting and resultissuing procedures. The system has been designed to run online with quality, including security mechanisms. Web-Based Collaboration and Telemedicine Systems (Not Specifically for HIV) The RAFT project permits remote collaboration, case discussion, and data sharing over low bandwidth networks between Geneva University Hospitals and Bamako, Mali. The collaboration is being extended to other French West-African countries. It is built using Linux and other open source software. The IPATH server allows image sharing in pathology and radiology and is being used in South Africa and the Pacific as well as Switzerland. It is built with open source software and is available free at www.sourceforge.net. Telemedmail is a secure email and web based telemedicine system under evaluation in South Africa and Peru; it was built using Java and open source software and is available free at www.sourceforge.net. Satellife is using the cell phone network in Uganda to transfer data to a central site. Local healthcare workers collect data on Palm Pilots and then connect to a local, battery powered server called a Wide Ray Jack. This server allows data to be sent to and from a central database via a cell phone modem. More information is at http://pda.healthnet.org. The International AIDS Vaccine Initiative (IAVI) performs multi-center HIV vaccine clinical trials in resource-constrained settings, mainly in Africa, utilizing centralized databases for data management. IAVI implements efficient and cost-effective telecommunication infrastructure at the sites, to allow data transfer through the Internet to central databases, using radio links, leased lines, or satellite connections. Online (web-based systems) and offline solutions (Datafax) are used, depending on technologies and bandwidth available, as well as cost and service reliability. Security

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Healers Abroad: Americans Responding to the Human Resource Crisis in HIV/AIDS measures are taken due to the sensitive nature of the data and to ensure confidentiality of trial participants. More information about IAVI’s work can be seen at www.iavi.org. FINAL CONSIDERATIONS AND QUESTIONS Realistic Goals and Appropriate Assessment ICTs cannot stand alone in most, if not all, health programs and initiatives. Conducting an appropriate assessment to assess the potential benefit that ICTs may bring to the project or initiative remains central to an effective and sustainable implementation. ICT assessment should occur in the formative research or communication analysis phase of planning programs. Key Assessment Questions: In what ways can ICT benefit the prospective project? Will ICT serve a communicative (e.g., websites, training) and/or backend function (e.g., data collection, resource monitoring)? What are the most critical applications that should be implemented? What are the prospective limitations, liabilities, and risks of using ICT in a particular application? How might they be mitigated? How many and what cities of the PEPFAR countries will be included in the initiative, and what type of information system and database are needed? How many people will be included in the database, and what is their geographic distribution? What type of information system should be managed? Clinical and/ or laboratorial? What are the training needs? Key Assessment Points: Evaluation of telecommunication infrastructure Availability, cost, and reliability of bandwidth Evaluation of local capacity and establishment of partnerships Analysis of social and political situation Privacy and confidentiality Security mechanisms Condition of electrical power supply (implementation of generator, UPS, etc.) Data backup and disaster recovery

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Healers Abroad: Americans Responding to the Human Resource Crisis in HIV/AIDS Sustainability and Implementation Success Oftentimes the latest ICTs are not the best solutions to implement, it is not uncommon for program developers to overlook older more tested and more supported ICTs in the name of being “high tech.” Prospective ICTs should be measured against original project goals. Does the ICT fulfill the given need? The sustainability of a particular ICT has technical, social, and administrative dimensions. Key Sustainability Questions: Can the ICT applications be supported adequately by local personnel? Are there sufficient stakeholders (of the ICT) within the project? Have the stakeholders contributed and/or assisted in the implementation of the ICT? Will the implemented ICT infrastructure and systems increase the capacity of the sites and bring contributions to the local professionals? REFERENCES Alcantara CH. 2001. The Development Divide in a Digital Age. Geneva, Switzerland: United Nations Research Institute for Social Development (UNRISD). Chetley A. 2001. Improving health, fighting poverty: the role of information and communication technology (ICT). Exchange (1). [Online]. Available: http://www.healthcomms.org/pdf/findings1.pdf [accessed March 22, 2005]. Delgadillo K, Borja R. 1999. Learning Lessons from telecentres in Latin America and the Caribbean. Ottowa, Canada: International Development Research Centre (IDRC). Fraser HS, Jazayeri D, Nevil P, Karacaoglu Y, Farmer PE, Lyon E, Fawzi MK, Leandre F, Choi SS, Mukherjee JS. 2004. An information system and medical record to support HIV treatment in rural Haiti. BMJ 329(7475):1142–1146. Lima R, Dantas MCS, Vilela WT, et al. 2000 (July). SISCEL: A Nationwide System for Managing CD4 and Viral Load Exams in the Brazilian Network of Public Health Laboratories. Presented at the XIII International AIDS Conference, Durban, South Africa. Lima R, Branch G, Muluubya A, et al. 2004 (July). Implementing an Information Technology (IT) Infrastructure for HIV Vaccine Clinical Trials in Resource-Constrained Settings. Presented at the XV International AIDS Conference, Bangkok, Thailand. Peizer J. 2000 (June). Bridging the Digital Divide: First You Need the Bridge. [Online]. Available: http://www.mediachannel.org/views/oped/peizer.shtml [accessed March 22, 2005]. Soh C. 2001 (April). Resurrecting the Dinosaur: Creating Networks to Recycle ICT Hardware. [Online]. Available: http://www.iconnect-online.org/Stories/Story.import69 [accessed March 22, 2005]. Storey M. 1999. Information and Communication Technology. [Online]. Available: http://www.aiha.com/index.jsp?sid=1&id=1279&pid=4739 [accessed March 22, 2005]. Veloso V, Sudo E, Lima R, et al. 2000 (July). Promoting the Rational Use of Antiretrovirals Through a Computer Aided System for the Logistical Control of Aids Medications in Brazil. Presented at the XIII International AIDS Conference, Durban, South Africa.