Pandemics in the Network Society: ICT for Development in the time of AIDS (2003) by Manuel Acevedo

UNDP Practice Note Pandemics in the Network Society: ICT in the time of AIDS

16 October 2003

2 Manuel Acevedo

EXECUTIVE SUMMARY Pandemics in the Network Society: ICT in the time of AIDS HIV/AIDS is no longer only perceived as a public health issue; it is now accepted by the world’s leaders as a global economic, social and development issue of highest priority and the single greatest threat to the well being of future generations. In particular, HIV/AIDS constitutes the largest war being fought in Africa. The figures macabrely speak macabrely for themselves. By the end of 2002, 42 million people were living with HIV/AIDS, and 3.1 million people succumbed to the disease in that year alone. In Southern Africa, four countries have prevalence rates that exceed 30% among the adult population (Botswana, Lesotho, Swaziland and Zimbabwe). Between 2002 and 2010, an additional 45 million people are estimated to become infected in low and middle-income developing countries. The HIV/AIDS pandemic is a long-term catastrophe that has not yet peaked. HIV/AIDS compounds other developmental gaps, since it mostly affects people at their most productive ages. For example, food production is impacted, which in turn contributes to worsen the effects of the disease, as malnourished people will be worse hit. Even with the increased attention and resources given to confront the pandemic (eg. through the new Global Fund to fight AIDS, Tuberculosis and Malaria), there are significant shortages of resources to address it. Every available asset must be put to use to confront HIV/AIDS. Information and communications technology (ICT) constitutes one of those assets

UNDP’S STRATEGY: ICT-ENABLING HIV/AIDS INTERVENTIONS HIV/AIDS is the first major epidemic of the Network Society. New information and communication technologies are at the core of this new era, and should be more widely used to confront the disease and its wider developmental effects. ICT-based networks provide structures on which to dynamically anchor joint action and collaboration of people/institutions across the globe to fight the epidemic. The value of ICT increases as the development nature of the HIV/AIDS problem grows deeper and more complex Three major reasons underscore the utility of ICT tools. First, there is still no cure nor vaccine at hand, so it appears that information is indeed the most powerful weapon we have in the fight against HIV/AIDS – and ICT are excellent informational tools. Secondly, ICT can help increase productivity and generate new resources in a context of decreased inputs and where the needs for public services of the population are increasing – this being particularly the case in hard-hit countries. Thirdly, electronic networks facilitate collaboration of people in ways that were not possible when the disease first broke out in the late seventies - solidarity flows through cables and wireless connections alongside with bits and bytes. UNDP believes that the epidemic´s advance must be fought on many fronts, as more and more countries are recognizing. Public health is of course the main front. But in hardhit countries, HIV/AIDS is crippling governance structures, undermining economic stability and compromising the opportunities for the new generations (including the millions of orphans it is leaving behind). The entire UN System has mobilized to provide contributions on its various areas of expertise. UNDP is helping developing country governments meet the tremendous governance challenge posed by the disease.

In 2000, UNDP made HIV/AIDS one of its top organisational priorities, integrating it into its broader efforts to support effective democratic governance and poverty reduction. UNDP supports countries in placing HIV/AIDS at the centre of national development dialogue and budget decisions, facilitating multi-stakeholder participation and supporting various levels of intervention (from the state to the local, including international cooperation). Moreover, as a leader in the integration of ICT into human development processes, UNDP believes that it is necessary to ICT-enable a wide variety of HIV/AIDS interventions.

ADDED-VALUE OF ICT IN THE FIGHT AGAINST HIV/AIDS From the wider developmental perspective, ICT can serve an array of tools and applications to help mitigate the effects of human capital loss. The basic guiding principle is simple, as illustrated in the graphic: with less people to deliver public services, and similar or increased needs of the population, resources have to be used more effectively/productively. For instance, with less teachers at hand, they need to be better supported and more productive – and ICT can help them with teaching materials, training about teaching itself, monitoring and pedagogical support, and collaboration from other teachers and educators. Fig 1: changes in process to achieved desired outputs with reduced inputs

Inputs Reduced

Process Innovation Higher productivity Inclusion of other resources

Outputs Equal or increased

ICT components should be integrated into HIV/AIDS-related actions and initiatives, because of their low cost-benefit ratios. Money invested in these ICT components should be a small fraction of the overall resources dedicated to programmes and activities 1. Moreover, ICT can help leverage further resources – like, for example, volunteers around the world contributing online through the Internet. Network approaches should feature prominently in how ICT is used in these contexts. This implies the connection of individuals and resources in nearly-real time for specific objectives. ICT-enabled development networks bring added-value in (1) combining resources from any place in the world, in particular information resources, (2) decentralizing operations and activities – and providing the proper tools to manage them; and (3) involving other actors from anywhere in the world – exercising “wired solidarity”. Speaking of solidarity, ICT Volunteering is proving to be an important asset for human development. ICT Volunteering is the range of volunteer action whose common characteristic is the targeted use of ICTs, and includes (1) actions where volunteers help 1

. For example, ICT should be integrated in the design and implementation of short/mid-term human capacity replenishment programmes involving UNDP and the UN Volunteers programme for those countries in Africa where HIV/AIDS has become a national emergency.

5 others to make better use of ICT2, and (2) using ICT as means for volunteering 3. ICT Volunteering and will have special importance in the global fight of HIV/AIDS because of the magnitude of human, technical and knowledge resources needed (many of them simply cannot be paid for), and the fact that there are many ICT-savvy people willing and able to get involved. As we said before, every possible asset has to be harnessed in this long-term fight.

ICT AND HIV/AIDS: IS THERE A CHOICE? Questions do arise about the adequacy and timeliness of ICT in these circumstances. After all, the epidemic is causing extreme deprivation in places whose infrastructure and levels of capacity were already weak. Most people in those countries have never touched a keyboard. ICT could be seen as a luxury or as a deviation of funds or energy from more urgent needs, like medicines or food aid. ICT are means to an end, technology tools that are relevant in some situations and not in others. Those expecting some kind of panacea from the “magic” new technologies will be disappointed. Careful analysis of the value of information and communications is required in every case. Results for some cases may indicate that, contrary to first impressions, in situations where HIV/AIDS has become a development crisis, the intensive and widespread application of ICT may prove to be indispensable (particularly in the short and medium term), to achieve minimum functioning levels in some sectors. Not even large injections of cash (which do not exist, anyway) could lead to the necessary increases in productivity. To support the provision of health, education and other government services, there may be no option but to place ICT at the center of national strategies. Moreover, let us remember that, indirectly and at times also directly, information saves lives.

ICT APPLICATIONS IN THE HIV/AIDS CONTEXT This UNDP practice note explores strategies and real-life examples for ICT use in the larger context of HIV/AIDS. Special consideration was given to use of these technologies in situations where the disease’s impact on human capital alone is so severe that major capacity “replenishment” initiatives will soon get under way, as in most countries in Southern Africa. The paper explores ICT applications grouped in two areas: those related to the health dimension of the pandemic, and those to address its wider developmental implications. Among the latter, three areas are explored: governance, education and economic activity. The paper highlights uses of ICT applications that can be incorporated in the design of new programmes or integrated in existing ones. A comprehensive study of ICT applications across all development impacts of HIV/AIDS is outside the scope of this note, and would indeed constitute a beneficial research exercise at this time to offer decisionmakers and planners with additional information. A. ICT and HIV/AIDS as a health problem 2

The UN Volunteers programme, administered by UNDP, manage a major initiative of this type, the United Nations Information Technology Service (UNITeS); www.unites.org 3

UNV manages the largest Online Volunteering service for development, through NetAid; www.netaid.org/OV.

6 The health dimension of HIV/AIDS is where ICT has been mostly used in the overall context of the pandemic. We have identified the following:  Information access and locally-relevant content . ICT serves to access information, which is the first step towards generating knowledge and putting it into action. There is by now a substantial body of information resources on HIV/AIDS in web sites/portals, databases, CDs. Unfortunately, most are in English, which limits their usefulness. ICT can also help to produce locally-relevant content, in languages people can understand, even using multimedia formats – eg. for illiterate people.  Communication for prevention, outreach and support to PLWHA . Electronic communications serve as (1) tools to prevent the spread of the disease, and (2) as support channels for people living with HIV/AIDS 4 (PWLHA). Commonly-used applications are on-line discussion lists, mailing lists, on-line conferences, electronic groups software, electronic bulletin board services and chat rooms. In most cases, they can be set up and managed without high ICT technical expertise. They are effective for disseminating information, networking and learning, Through this medium, PLWHA are able to interact and exchange experiences without fear of being stigmatized.  Collaboration / taking action . ICT applications that bring together groups of people through the Internet (eg. “groupware”) can be used stimulate and support direct collaboration with those affected or working on the disease. This is an important feature of electronic networks in the Information Age: to expand the possibilities of cooperation. Some of these tools are Web-based and can be used for free, eg. YahooGroups or Smartgroups.  Training and capacity building. Training, or more broadly, capacity building for health workers, is another area where ICT is making a difference. At the community level one of the key uses of ICT for HIV/AIDS is for education about best practices in prevention, treatment and support for people providing care. Elearning groups a number of ICTs to support (1) in-situ learning, via learning materials; (2) collaborative learning, among people in different locations; and (3) online learning, which adds considerable value to older practices in “distance learning”.  Research and development. ICT is used for HIV/AIDS research in multiple ways, as in most fields of scientific endeavor. It is used in laboratories for clinical research. Mobile computing is very valuable for field-level research (clinical trials, epidemiological, sociological) – mobile computing has greatly expanded possibilities in the last 5 years. In addition, electronic access to the latest scientific literature is now possible, sometimes via cooperation projects that make the costs for the users negligible.  Telemedicine. It encompasses the use of ICT for remote diagnostic and treatment of diseases or injuries, as well as improvement of health care in rural/isolated places through services provided remotely in collaboration with medical personnel on the ground. Telemedicine applications in the HIV/AIDS context can help over-stretched medical staff and facilities, improve medical

This includes people working on the epidemic, those that are HIV+ and perhaps also suffering from a related opportunistic disease, or are affected fhrough/ caring for someone else

7 care in rural settings, and save time/money for patients (eg. by reducing the need to travel for consultations).  Integrated Systems. We have characterized elements of ICT applications separately, to better identify their characteristics. In reality, ICT initiatives often integrate various of the categories identified. For example, portals and groupware include information repositories as well as the ability to communicate and set up specific networks. From a policy standpoint, it makes sense to design interventions that include multi-faceted ICT applications in integrated fashion, particularly within national programmes. B. ICT and HIV-AIDS as a Development Problem B.1 Governance ICT applications in the governance area must serve to strengthen the “social capital” of elected representatives, stakeholders and citizens. This is especially relevant in the HIV/AIDS context, because joint efforts of all sectors are truly required. Thus, if some traditional government services may have to be delivered through NGOs, given their local presence and knowledge of the community, then those NGOs will need to attain sufficient capacity on ICT to help deliver ICT-enabled services. We highlight a number of e-governance applications relevant to national contexts of severe HIV/AIDS incidence, spanning a range from mechanical to innovative ICT applications:  Automating government tasks, to improve their efficiency. This includes o

Intranets/extranets to improve access to/exchange of information by public officials (in the Administration, Parliament, courts, etc.). This will be particularly helpful for new staff. E-government applications for electronic service delivery to the citizenry, available on a 24/7 basis. Even with a modest progression of services, It would increase productivity and quality for civil servants - as well as save time/money for those citizens able to access the Internet.

 More fluid government-citizen communications . Placing significant amounts of public-domain information is one way (laws, statistical data, etc.). Creating new channels for citizens-to-Government communication is another, eg. via emails of government officials, and electronic pubic fora to discuss issues and influence policy making. The effect is a more transparent and participatory governance, at very little cost to the State.  Establishment of a national comprehensive HIV/AIDS information management system (where there may be none) to support all Government personnel in managing the pandemic, including (1) statistical data sets on morbidity, absenteeism, etc.; (2) a comprehensive knowledge base for HIV/AIDS in relation to various sectors and aimed at civil servants to be better informed and to use as references in their work; (3) a mapping and clearing-house of the organizations in the country, including networks, engaged in responding to the HIV/AIDS crisis or links to other countries organizations.

8  Accelerated/on-the-job training for new government employees . New ICT-based training curricula may be developed. Online classes would offer additional training possibilities, particularly for those in rural/isolated areas. It´d also reduce the need for in-situ class-room time so that less experienced civil servants are needed for training tasks.  Mentoring and support to new/junior staff . Electronic communications facilitate individual mentoring and monitoring of newer staff by some experienced civil servants. Virtual communities also help newcomers as spaces for the exchange questions, experiences and information, and becomes a type of group selfsupport mechanism – which, by the way, also helps the more senior staff.  New substantive online support bureaux. Through a web site by the central government, support and assistance would be provided to staff in all sectors of Government, particularly to those with newly-found tasks arising from decentralization strategies ((in fields like Trade, Registry, Agriculture, Taxes, etc.)  Mobile e-governance. Services to people living with and affected by HIV/AIDS that cannot leave their homes regularly. Social workers become the first/last mile of e-governance connectivity with mobile ICT devices (a notebook computer, even a PDA), and visit these people in their homes or neighborhood centers to help them carry e-governance services. B.2 Education Education is a fundamental public service, and one where the impact of HIV/AIDS is easily seen: the number of teachers is decreasing and more children are orphaned or not cared for by their parents. Many of the uses of ICT which we have seen in the governance or health areas are also suitable for education. The proper use of ICT makes educational processes more efficient, supports the provision of inputs to teaching and learning, and contributes to improve the quality of education. ICT is used to set up information repositories for education, and to facilitate communication among teachers, school administrators and other educational stakeholders. Electronic networks can serve to attract cooperation from individuals and institutions alike. ICT is also an effective medium for teacher training, so important in the time of HIV/AIDS crisis. And it can be used to support educational governance, at ministries of Education, universities, and primary/secondary schools. Some of the ICT components in national programmes to support education in HIV/AIDS ravaged countries may include:  Creation of a national education web portal. Established by the Ministry of Education in collaboration with other entities like NGOs. It would offer (1) educational content and pedagogic resources for teachers, (2) information on news, announcements, events, scholarships; (3) tools to facilitate collaboration among educators, students, parents and administrators.  Establishment of a national teacher virtual training academy . This would serve to complement existing training programmes for new teachers, which may need to be accelerated in situations where there are severe teacher shortages. Online delivery through the virtual academy would allow for self-paced courses which would be taken as on-the-job training. An instructor would be able to work with a higher number of teachers when supported by this type of platform.  Online Volunteer “Teacher2Teacher” programme. This type of initiatives would allow experienced teachers around the world to establish a one-to-one

9 collaborative/mentoring relationship with teachers in countries affected. the country. Collaboration by the online volunteer teacher could entail providing educational support materials, exchanging experiences, or doing online research.  Open Source in Education against HIV/AIDS. This programme would introduce and promote Open Source software as an alternative software platform for the educational sector, with its corresponding savings in money and commercial dependencies. Open Source programmers would collaborate around the world as volunteers to create and adapt the appropriate suite of base programs and applications. A component of the programme would build technical skills on this type of software products, so there would be national capacity to support them. B.3 Income Generation Poverty worsens the impact of HIV/AIDS and it also results from the disease, in a vicious circle. One of the key dimensions of poverty relates to economic activity and income generation. ICT can be utilized in just about every aspect of economic and productive activity. In the paper, we have only examined ways to directly support productive activities and increase/maintain family incomes in the HIV/AIDS context. Tele-work. ICT makes it possible for people that live with/are affected by HIV/AIDS to continue to work online and receive an income. Community telecenters can provide special services to people working online in these countries. The larger companies can make arrangements with their sero-positive employees to perform some work from home. The State tends to be a country´s largest employer, and itself can be a powerful contributor to promote and support work for people living or affected by the disease that can be carried out online, at least in part. This will generate additional economic activity, more tax revenues, while allowing more flexibility to individuals employed in this manner. NGOs and other associations specially focused on the effects of HIV/AIDS could be exploring online work opportunities with overseas employers, eg. for the kind of data processing or customer attention activities that are often carried out in developing countries because of their lower costs. In particular, companies in the North with significant Corporate Social Responsibility programmes5 could be approached. ICT-supported commerce. While fully-fledged e-commerce requires extensive infrastructures (technological, financial and normative), some of its basic components like displaying in a web site products, prices and contact information, is simple and economical. Cooperatives can pool resources to set up partial e-commerce services. They can also use ICT to work with agents in the North which following “Fair Trade” principles can help them sell their goods in developed economies. Community telecenters and economic activities. Community telecenters serve a host of ICT community needs and can function as local development centers. Some of their offerings are related to economic activities, like accessing produce prices in markets around the country, or information about better productive techniques. They can also provide access to online job listings and marketplaces, where people infected/affected by the virus could look for work. ICT training carried out in the telecenter will also make the trainees more employable. 5

Like those in the UN Global Compact (www.unglobalcompact.org)

CONTENTS Executive Summary............................................................................................................3 Abbreviations and acronyms..................................................................................................11

I. Introduction..................................................................................................................12 II. Overall Strategies for ICT in the Efforts to Confront the HIV-AIDS Pandemic.....13 II.1 Information......................................................................................................................14 II.2 Communications and Networking..................................................................................14 II.3 ICT in relation to other developmental needs – costs, benefits and directions...........14

III. Areas of ICT Applications.........................................................................................17 III.A ICT for HIV-AIDS as a Health Problem .............................................................17 III.A.1 Information repositories: providing the raw material............................................18 III.A.2 Communication for prevention, outreach and support to PLWHA: getting the message out..............................................................................................................................19 III.A.3 Collaboration – taking action ...................................................................................20 III.A.4 Training and capacity building.................................................................................20 III.A.5 Research and development........................................................................................22 III.A.6 Telemedicine...............................................................................................................23 III.A.7 Integrated Systems.....................................................................................................24

III.B ICT and HIV-AIDS as a Development Problem..................................................25 III.B.1 Governance and Government...................................................................................27 III.B.2 Education....................................................................................................................31 III.B.3 Income Generation.....................................................................................................33

IV. Conclusions................................................................................................................34 V. Bibliography and Links to Resources.........................................................................36 VI. Annex : Additional examples.....................................................................................40

11 Abbreviations and acronyms

AIDS

Acquired Immune Deficiency Syndrome

Compact Disc

DVD

Digital Versatile Disc

DOT

Digital Opportunity Task Force

GIS

Geographic Information System

HIV

Human Immunodeficiency Virus

ICT

Information and Communications Technology

MDG

Millennium Development Goal

NGO

Non-governmental organization

PLWHA:

People Living with HIV/AIDS

United Nations

UNAIDS

Joint United Nations Programme on HIV/AIDS

UNDP

United Nations Development Programme

UNV

United Nations Volunteers programme

12 “Information is the most powerful weapon we have in the fight against AIDS.” (www.aids.org/index.html)

I. INTRODUCTION

HIV/AIDS is no longer perceived as only a public health dilemma; it is now accepted by the world’s leaders as a global economic, social and development issue of highest priority and the single greatest threat to the well being of future generations. (UN Development Group – Guidance Note on HIV/AIDS). By the end of 2002, it was estimated that 42 million people were living with HIV/AIDS6. During that year, 3.1 million people succumbed to the disease. Southern Africa suffers the most today: four countries have an adult (15-49 yrs) prevalence rate exceeding 30%: Botswana (38.8%), Lesotho (31%), Swaziland (33.4%) and Zimbabwe (33.7%). Between 2002 and 2010, current projections indicate than an additional 45 million people will become infected with HIV in 126 low- and middle-income countries unless the world succeeds in mounting a drastically expanded, global prevention effort. [UNAIDS 2002] HIV/AIDS compounds other developmental gaps, since it mostly affects people at their most productive ages. For example, food production is impacted, which in turn contributes to worsen the effects of the disease, as malnourished people will be worse hit. When the infection rates reach levels similar to those noted in Southern Africa, the pandemic undermines their entire governance frameworks78. In particular, it impairs the ability of the State to function, providing basic goods and delivering basic services, at a time where those functions are needed most. In these scenarios, the challenge goes beyond capacity building. Wherever HIV/AIDS is posing a humanitarian and governance crisis, emergency measures are called for, among them efforts of “capacity replenishment”. At the recent UNAIDS conference in Barcelona, the question was posed “How to keep schools functioning, or transport systems, legal systems or water supplies or police services when 20-30 percent of the people you have trained are, in fact, dying of HIV/AIDS?” (Schumacher, 2003) In 2000, UNDP made HIV/AIDS one of its top organisational priorities, integrating it into its broader efforts to support effective democratic governance and poverty reduction.. Focusing on promoting an enabling policy, legislative and resource environment for an effective and truly multi-sectoral response to the epidemic, UNDP supports countries in placing HIV/AIDS at the centre of national development dialogue and budget decisions; helping countries develop capacity for action as well as plan, manage, and implement their response to the epidemic; engaging people and institutions well beyond the health sector; promoting decentralised responses and community-level action; integrating a human rights framework and gender perspective into all aspects of the response; and raising domestic and international resources for national programmes. [UNDP 2003b] 6

5 million were newly infected with the HIV virus in 2002 alone

Referring to governance in its wide meaning that to include both (1) the governmental function of providing services and its capacity to establish multisectorial processes in a given society, as well as (2) the abstract norms or rules of the game which define actors, procedures and legitimate means of collective action (as in e.g. economic governance). 8

Information and communications technology (ICT) provide important tools in the efforts to fight HIV/AIDS. At present, the best strategy to deal with the pandemic focuses on prevention. There are yet no vaccines available, and the cost and complexity of medicinal treatment is high. Information is essential to carry out any prevention activities. Communications are crucial to keep those working on the disease abreast of new developments, and for stakeholders to share experiences and find the comfort of other people. Moreover, electronic networks facilitate collaboration and involvement in ways that were not possible when the disease first broke out in the late seventies. This UNDP practice note explores ways and means to apply ICT in the worldwide efforts to fight HIV/AIDS. It argues that the value of ICT increases as the development nature of the HIV/AIDS problems grows deeper and more complex – eg. where there exist significant capacity limits to overall governance. It provides examples of how these technologies are used today already and how it complements the various actions taken by stakeholders. And it proposes that network dynamics be expanded beyond the already significant realm of information and towards stimulating action and further engagement of individuals to confront the pandemic.

II. OVERALL STRATEGIES FOR ICT IN THE EFFORTS TO CONFRONT THE HIV-AIDS PANDEMIC

ICT holds a special potential to help countries achieve key development goals, including the Millennium Development Goals (MDGs) (http://www.un.org/millenniumgoals/)9. ICTs tools are applicable across the entire development spectrum and can help to make better use of scarce resources Goal 6, which includes the target of “Have halted by 2015, and begin to reverse, the spread of HIV/AIDS”, is no exception. Particularly when accurate and timely information may well be the most important element in the fight against the disease and its individual and social development effects. Research indicates that there is a wide range of ongoing HIV/AIDS initiatives that are supported by ICT. Most of it comes through (1) provision of information to stakeholders/ general public on HIV/AIDS, covering various aspects of the epidemic, and (2) networks that use e-mail and discussions lists to exchange information and stimulate action/collaboration among medical professionals, people living with HIV/AIDS (PLWHA) and others. [Wairingi 2000] But in countries with particularly high incidence rates, the possibilities of ICT need to be harnessed more intensively. As we will see below, these technologies can help support a decreasing number of people carrying on essential public services, in health as well as in education, public administration and other socio-economic spheres. In such countries, a depleted workforce is less able to provide knowledge, skills and training to a new generation of workers, creating a further downward spiral in productivity and the improvement of living conditions [Schumacher 2003]. For example, ICT can help support a smaller number of remaining, experienced school teachers, as well as new inexperienced recruits brought on-board in accelerated fashion, with online educational 9

First report of the UN Secretary General to ECOSOC on the annual activities of the UN ICT Task Force, E/2003/56, 28 April 2003, http://www.unicttaskforce.org/community/documents/764023199_UNICTTF_1stReport.pdf

14 resources, distance training, e-mentoring, etc. If there is one area of development cooperation where ICT mainstreaming needs to be seen as an urgent necessity, and not as an option, that is HIV/AIDS.

II.1 Information ICT facilitates access to information and knowledge by medical personnel, people affected by the disease, local officials, and others who are involved in preventive and caring functions. And they do so at little cost and high convenience compared to other ways to get that access (eg. traveling to a main city to get hardcopy information). ICT also makes it easy to create content in a way that is easily accessible and modifiable using some of the technologies. With a modicum of capacity and infrastructure, doctors, social workers, teachers or government officials can generate digital content for use locally or in a different continent. There is a considerable volume of information about HIV/AIDS on the Internet. Much of it is provided by reputable organizations and updated often, so it is reliable and useful. We will refer to some examples in section III to illustrate the type of existing content and the variety of these resources. Some concentrate on medical and research information; others have materials for prevention and outreach, while others offer updates of the situation in a given country and have references and contacts for support. Many offer platforms for discussions and even virtual events.

II.2 Communications and Networking Information serves little purpose if it is neatly stacked away in some inaccessible vault. One of the benefits of ICT is that is widens access to information in simple, fast and inexpensive ways. For an epidemic of global proportions like HIV/AIDS, the ability to get to the right information from anywhere in the world, e.g. either in a web site or a database, is more and more of requirement by those confronting the disease. Electronic communications provide much of the added value of ICT in fighting the pandemic. Electronic communications can be used for more than access to a given document or even a digital video stream. The networking dimension of ICT allows for people to get involved and collaborate, to share experiences, or just to find comfort in somebody else also going through difficult situations. Information exchange can provide support to PLWHA and communities in addressing the effects of the epidemic. Networks are also useful in raising the visibility of issues, as the particularly active HIV/AIDS movement has demonstrated since the early 80´s. If the Network Society is the social manifestation of the Information Age [Castells 1997], then networks will prove essential in combating the pandemic.

II.3 ICT in relation to other developmental needs – costs, benefits and directions Investment in ICT10 may seem as a luxury given the inadequacy of resources available and the immediate needs of those suffering from and affected by HIV/AIDS. Clearly, ICT does not provide the same direct benefits as medical care nor other immediate needs –

Which does not only include the cost of equipment, but also related costs of training, connectivity, maintenance, etc.

15 ie. people do not eat information 11. The role of information and ICT is an indirect one, for example supporting people who are working or affected by HIV/AIDS, and to help them make better decisions. Information can and does save lives. Any institutions or initiatives active in the field of HIV/AIDS wanting to include ICT components and support should conduct cost-benefit analysis on the overall viability of ICT tools. Ultimately what is needed is to gauge the value of information and communications to those that are active in the response to the disease and/or affected by it. Only then that value can be compared with the costs of the technologies that will help to provide it. Potential beneficiaries and users of the technology should be the ones defining their information needs. ICTs by themselves do not make sense: as means to an end, they need to be integrated into the functioning of institutions to help them achieve their stated objectives with greater effectiveness and efficiency. Or, in other words, they must provide solutions to existing problems, or possibilities to generate new opportunities, or both. Access to ICT does not need to be universal 12: access to information should. The emphasis on ICT access should be for intermediary groups: focused applications of ICTs to empower community institutions, health care providers, and those working with the poor and vulnerable groups. Also, we need not equate ICT with the Internet. An encyclopedia, a sizable database or dozens of websites can fit into one Compact Disc (CD), at about 700 megabytes of storage space 13, costing less than $1 per reproduced copy. Thus, even without Internet connections, CDs can provide wider access to information, like training materials and care manuals (even in interactive, multimedia formats). It will also be cost-effective to provide common ICT infrastructure and solutions that respond to a combination of development needs, including those related to HIV/AIDS. For example, an internet satellite connection (eg. VSAT terminal) and a community telecenter can provide for the basic ICT needs of an entire village – servicing teachers, doctors, local officials, businesspeople, etc. Telecommunications companies and regulatory authorities can work together to extend the common “roads” of information, to allow for discounted connectivity rates to social clients like schools, hospitals, libraries, telecenters, etc. In any analysis of the feasibility of introducing ICT elements, it is useful to consult with stakeholders in other settings to learn about their experiences and assessments on (1) what uses they are making of ICT, (2) how well is it working, and (3) how valuable the technologies are for them. Fortunately, there is already a significant amount of experience on the use of ICT to help confront HIV/AIDS to draw from – we will have a glimpse of them, and the bibliography contains references to many more. 14.

Though one could argue that a vaccine is nothing more than biological information provided to the body to develop immunity against a certain disease. 12

That is a long-term developmental goal, which will likely accelerate the evolution from mere information societies to knowledge societies. 13

DVDs (or digital video discs) can contain from 4.7 to 17 gigabytes, ie., up to more than 20 times the storage space of a CD-ROM. Essentially, a DVD has the storage capacity of a small computer hard disk, and can hold entire libraries of information.

16 Regardless of the types of ICT applications, it is important to emphasize the oft-forgotten requirement to generate sufficient human and institutional capacity to make the most of these technological tools. Whether this is done by staff/volunteers in a given project, via organized training/capacity sessions, or through peer-to-peer collaboration, it ought to be planned into any initiative to combat HIV/AIDS that intends to integrate the use of ICT. Multifaceted shortcomings resulting from the digital divide make the application of ICT in the HIV/AIDS context more challenging in poorer countries, where the epidemic is more strongly felt. Most of the information about HIV/AIDS on the Internet is in English and a few other major languages, as is the case with most content on the Internet. An even bigger limitation is the poor infrastructure and connectivity in most places within developing countries. We have already commented on the lack of capacity. This is why ICT mainstreaming, wherever its use is deemed to have reasonable cost/benefit ratios, needs to be explicitly included in plans and strategies to confront the disease, and not be left as an afterthought. The African Development Forum 2000 provided a good example, with recommendations recapped in the box below. Recapping strategy: the African Development Forum 2000 It is useful to refer to how concerned organizations are viewing the uses of ICT in the context of HIV/AIDS15, in recapping the considerations we have described above. A good example is provided by the African Development Forum. HIV/AIDS was the central theme of the African Development Forum 2000 16, held in Addis Abeba by the UN Economic Commission for Africa. A special interest group on ICT and HIV/AIDS was set up to discuss challenges and opportunities by ICT 17. Members of the focus group agreed that ICT has a major role to play and identified a number of areas where ICT can play and is playing a significant role in the fight against HIV/AIDS, as follows: a. sharing of information in a timely and efficient manner b. providing a platform for debate 14

The IDRC study conducted by Margaret Driscoll contains a particularly rich set of references to organizations, projects, etc. that are making use of ICT in the context of HIV/AIDS . 15

UNAIDS appears to promote the new technologies implicitly by mentioning/supporting information exchange and networking, but not explicitly by describing their applications. IDRC [2001] mentions that for UNAIDS the role of ICTs is to ensure that UNAIDS and Co-sponsor field staff have access to high quality and up-to-date technical advice and support by: • developing regional technical resource networks; • brokering and providing technical support through the UN system and country • program advisers; • identifying and promoting best practices at the regional level; • developing partnerships with regional entities of Cosponsors; • information networking; • programs on selected cross-border issues relevant to the region. 16

http://www.uneca.org/adf2000/

http://www.uneca.org/aisi/initiatives-ict&AIDS.htm

17 c. fostering new partnerships d. creating, accessing and updating accessible databases e. getting second opinion for specific diagnosis f. continuing medical education g. promoting acceptable practices h. improving collaborative efforts to save time and resources i. enhancing patient education j. enhancing prevention k. bypassing confidentiality problems and taboos l. elaborating better policies, programmes and priorities m. providing content moderation and increasing content relevance n. providing fora for advocacy for new treatments, drugs, etc.

III. AREAS OF ICT APPLICATIONS

The previous section described the rationale and general approach for the use of ICT use in the overall efforts to combat HIV/AIDS. We now turn to the types of ICT applications which are relevant in confronting the pandemic. The areas of ICT applications will be broadly divided into two categories, related to (1) HIV/AIDS as a health issue, and (2) the wider developmental effects of HIV/AIDS. The use of ICT for the former has accrued over time and is well documented. For the latter, evidence is more sparse, as few major interventions have been put into effect – thus we will draw from existing knowledge of ICT applicability on various development areas. We shall illustrate these applications of ICT with real-life examples intended to convey the possibilities in the use of the ICT in various dimensions of the HIV/AIDS problem. The selected examples are good manifestations of the potential of ICT in this context, and pin-point a variety of aspects of how different types of ICTs can be put to use in the overall efforts to conquer HIV/AIDS. In this respect they can be viewed as of pieces of a puzzle, which we hope can stimulate the interest and imagination of the reader. The examples are not intended to form a comprehensive survey nor do they necessarily reflect the most outstanding or most general applications of ICT in each category. 18 III.A ICT FOR HIV-AIDS AS A HEALTH PROBLEM

The wide range of ICTs to support health services are sometime referred to as “e-health”, and we can broadly categorize the use of these technologies for: •

Patient care/clinical treatment, either in-situ (eg. during a surgical procedure) or remotely (ie. telemedicine).

In the bibliography, we point to two special works with substantial references: (1) the IDRC study conducted by Margaret Driscoll listing many organizations and projects making good use of ICT as part of their fight in the context of HIV/AIDS, and (2) UNDP’s own database on good practices in ICT and HIV&AIDS. In addition (mention the portals)

18 • • •

Health information services to professionals (eg. pharmaceutical databases) or to the public (eg. web-portals like Web-MD). These include collaborative networks (eg. a regional association of cardiologists). Medical research and development (eg. recent mapping of the human genome). Health services management systems to improve efficiency and effectiveness of a provider of medical services (eg.. to administer a hospital, or to electronically manage patient records), or policy-related entities (ie. a Ministry of Health).

It is beyond the scope of this paper to cover all dimensions of e-health in relation to HIV/AIDS. We will focus on non-clinical uses of ICT (though will touch briefly on telemedicine). Digital Opportunities Task Force (DOT) Force study A report commissioned by the G8 countries (DOT Force 2002), indicated that three areas emerge as focal points for effective contribution of ICT in the fight against HIV/AIDS. 1. Creation and dissemination of preventive public health information, as the most critical element in educating the public and specific target groups towards understanding this disease and the preventive measures and behavioral changes that can save lives. Community-level application of ICT to support informational initiatives is proving the most effective approach. This approach is reliant on more common broadcast technologies, such as radio, television and video, and other ICTs, such as CD-ROMs and printed material. 2. Application of ICT to improving access to information, education and communication for health workers, in particular those in community and rural settings, holds one of the highest benefits for ICT, for example CD-ROMs, Internet, and distance learning technologies. 3. Population health (epidemiology) and research are critical components in the longterm management strategy for HIV/AIDS, and other disease. ICT offers significant opportunity for exploiting ICT in developing this evidence-based decision making capability.

III.A.1 Information repositories: providing the raw material The first step in generating knowledge and putting it into action is the provision of information. Putting knowledge into action will be facilitated if the information is easy and inexpensive to access, widely available, relevant and in understandable formats. There is a growing volume of information resources on HIV/AIDS. Most are in English, which of course presents a limitation as most of the world does not speak it. The challenge is in producing information resources which are practical for their potential users, in languages they can understand, even using multimedia formats for illiterate people to directly access the information. YouandAIDS.org: the HIV/AIDS Portal for Asia Pacific (http://www.youandaids.org/) YouandAIDS.org is an HIV/AIDS portal for Asia Pacific that seeks to address the stronglyfelt information and services needs of the region, particularly in the overall development

19 context, and act as a regional platform to synergise multisectoral responses against the HIV/AIDS epidemic. The initiative, which began under the UNAIDS Inter Country Team (South Asia), is expanded and is taken forward by the UNDP Special Initiative on HIV/AIDS Regional Programme for South and North East Asia (REACH Beyond Borders), as part of its Information and Communications Technology (ICT) activities. The portal includes ample information about medical issues, prevention measures, the spread of the epidemic, activities by country and a library of information and institutional resources. It also has a news section which changes daily, events, a guest column and interviews. It contains a database of NGOs and other organizations involved in fighting the disease, and a rich set of links to organizations and initatives.

III.A.2 Communication for prevention, outreach and support to PLWHA: getting the message out If information is the raw material to produce knowledge, communication is the essential process that converts that raw material into a knowledge fit for use in decision-making. Perhaps the only fortunate thing about HIV/AIDS is that it broke out at the same time that global digital communication structures were emerging, leading to the so-called “information revolution” Electronic communications serve as (1) tools to prevent the spread of the disease, and (2) as support channels for people who either work on the epidemic, are HIV+ and perhaps also suffering from a related opportunistic disease, or are affected through someone else. The most commonly used electronic HIV/AIDS resources are on-line discussion lists, mailing lists, on-line conferences, electronic bulletin board services and chat rooms. These applications have provided innovative ways of disseminating and sharing information on the epidemic, including opportunities for networking and learning, access to support services and expertise, and fora to discuss topical issues. Very importantly, PLWHA are able to interact and exchange experiences without fear of being stigmatized. The existence of Inexpensive and user-friendly e-communications tools, like web-based e-mail (eg. Hotmail) or web-based groupware (eg. YahooGroups, formerly e-Groups) allow individuals and organizations with Web access to set up networks on their own. There are 422 groups dealing with HIV/AIDS on the English-version of YahooGroups alone. This capability of “do-it-yourself networking” enables new opportunities for training, cooperation and linked action, collaborative research, mentoring, etc. HealthDEV (http://www.hivnet.ch/aids98/home.html) HealthDev is a major electronic meeting place that helps people and communities from all over the world exchange information and experiences in response to HIV/AIDS. HealthDEV is structured into specific fora: • Networking among people living with HIV or AIDS (PLWHA) • Sex work • Access to treatment and care • Community-based research • Human rights of people living with AIDS or affected by it. • Immigration Rights and HIV/AIDS • Gender-AIDS (topic-specific forum) • Media-AIDS (news and information to media organizations)

20 It also integrates regional and international fora, such as (1) Sea-AIDS (Regional forum for South East Asia); (2) AF-AIDS (Regional forum for Africa), and (3) INTAIDS (International forum)

III.A.3 Collaboration – taking action Organizations and individuals use ICT-enabled communications to share information, generate knowledge, and raise awareness about HIV/AIDS. But ICT also serves to stimulate and support direct collaboration with those affected or working on the disease. This is an important feature of networks in the Information Age: to expand the possibilities of cooperation. Solidarity flows through cables and wireless connections, alongside with bits and bytes. UNV/NetAid Online Volunteering service (http://www.netaid.org/ov) The United Nations Volunteers programme and NetAid offer a service for people to volunteer through the Internet. “Online Volunteering 19” is a powerful way of making use of ICT to engage people in direct action. Launched in 2000, the UNV/NetAid Online Volunteering service provides opportunities for thousands of people to make a difference by collaborating with people who may be in their city or in a different continent. It offers the largest number of online volunteering assignments and opportunities for development cooperation. And it helps host institutions to manage their online volunteers (eg. who applies, who is serving, reminders, certificates, etc.) through a suite of software tools in its extranet. Institutions active in fighting working on the HIV/AIDS pandemic have been involving online volunteers through the UNV/NetAid service with good results. The online volunteers and their host organizations essentially communicate via e-mail. The volunteers can carry out a endless variety of tasks and assignments. To illustrate this, the activities listed below were taken from just the first 70 of about 400 HIV/AIDS-related online volunteering assignments in 2002: UNV/NetAid Online Volunteering : Sample of HIV/AIDS-related assignments in 2002 • • • • • • • • •

Projects: formulation, promotion, planning Advice on institutional strategy and proposal development Research for HIV/AIDS campaign Web: design, development, management, hosting Research about web resources: web sites, discussion groups. Research and Documentation Contact Building Marketing Graphic Arts

III.A.4 Training and capacity building 19

It is also often referred to as “Virtual Volunteering”

• • • • • • • •

Translations (including medical/scientific) Data Base: development, management Preparation and editing of articles, brochures, etc. Newsletter: Editing/Layout Fundraising (including consultancies on it) Online job opportunities development Virtual organization management - OV programme coordination Institutional development

21 Training, or more broadly, capacity building for health workers, is another area where ICT is making a difference. At the community level, for example, one of the key uses of ICT for HIV/AIDS is through education about best practices in prevention, treatment and support for people providing care. The HIV/AIDS community can use these technologies to enhance in-situ learning, as well as for delivering online learning. For learning in a class-room, eg. at a community workshop, ICTs enable access to a wider range of learning materials, including in multimedia formats: a CD can contain video and sound as well as a large number of documents. ICT also facilitates collaborative learning, with students and teachers communicating to exchange information and carry out joint activities across institutions (even countries). Training institutions can form ICT-based networks to support each other, share resources and cooperate in specific initiatives (eg. to offer more comprehensive or formal courses or learning programs). Online training is by definition a direct result of ICT application for educational purposes. The minimum requirement is an e-mail connection, ie. web access is not absolutely required. Online training removes the constraints of location and extends possibilities to many more people than otherwise possible. And in comparison with traditional distance learning, it is interactive (eg. class debates are the heart of any good online class) and makes communications much more efficient (eg. sending one´s homework as an email enclosure, instead of in an envelope via “physical” mail). Regional AIDS Training Network

(http://www.ratn.org/)

The Regional AIDS Training Network (RATN) is a network of training institutions in the Eastern and Southern Africa (ESA) region. It is managed from Nairobi by a project of the University of Nairobi and the University of Manitoba. The overall goal of the Network is to act as a forum for communication and sharing of experiences between training institutions and to serve as an advocate for training needs. The RATN Secretariat carries out the following activities: •

Convenes and coordinates forums for experts meetings on training needs and development of courses;

•

Initiates and Conducts regional surveys to assess new developments and needs in training;

•

Produces a quarterly newsletter on training and related issues;

•

Stimulates Extension programmes for follow-up of ex-course participants;

•

Keeps a database of training institutions, resource persons and ex-course participants;

•

Produces a course calendar on regional courses;

•

Mobilizes resources from donors to support participants to regional courses;

•

Undertakes regional and international advocacy activities on behalf of its membership.

The possibility of using distance learning in their network has been discussed in order to alleviate training costs associated with travel and conferences. The production of CDROMs with training and support materials is also under consideration [IDRC 2002]. The

22 core training areas for the network are: (1) clinical management of STDs/HIV/AIDS; (2) counselling and community Outreach; (3) laboratory and research skills; (4) training of trainers/facilitators; (5) programme management. monitoring and evaluation; (6) communication skills & behaviour change.

III.A.5 Research and development ICT is used for HIV/AIDS research in a number of ways. One of them is field-level research and support to researchers, which will be treated in this section. We will not discuss ICT use for clinical research (eg. in a laboratory), where, as in any area of modern science, ICTs have become everyday instruments. Digital technologies facilitate wider access to scientific publications for researchers in developing countries. Most medical personnel, including scientists, have scant access to hardcopies of journals, papers, conference proceedings, etc. Cost may be the main factor, but so is the problem of timely delivery of documents (particularly to places outside the capital), having sufficient and reliable photocopiers to allow a greater number of people to use and keep copies of the publications, etc. With ICT, an individual can at least easily download a publication, print it, store it and also send it to other colleagues. ICT can also be used to gather information on the ground and send it/enter it into computer systems. Monitoring/surveillance systems (like Geographic Information Systems) are very important for keeping abreast of HIV/AIDS infection patterns and for epidemiological studies. Mobile devices (like handheld computers) can be useful to better assess the effectiveness of treatment and prevention activities for a project, and in preventing/responding to disease outbreaks. For new drugs or medical trials, the technologies are invaluable in assessing their effectiveness. SATELLIFE PDA project: Moving Information into the Hands of Those Who Heal http://pda.healthnet.org/ Handheld computers (also known as PDAs) and emerging wireless technologies provide unprecedented opportunities to move information out to where it is needed most. Relevant medical information can be packaged and put into in the hands of health workers in environments where electricity, telephone lines and books are not readily available, and the Internet may still be years away. Mobile computing is also powerful for data collection, providing rapid access to information that policy makers and health planners need to respond to and prevent disease outbreaks, practice sound resource management, and track public health issues. SATELLIFE conducted a successful trial of this technology in three African countries: Ghana, Kenya and Uganda. The project demonstrated that handheld computers work in this environment, can be easily adopted by new users, and provide a cost-effective alternative to personal computers for many functions. Most importantly, they fill a critical gap in the information chain. In Ghana, SATELLIFE joined with the American Red Cross to test the efficacy of handheld computers for field surveys during a measles immunization campaign. Paper surveys are normally used to gather data, which is then manually entered into a database and

23 analyzed to plan a follow-up campaign. The process is cumbersome, time consuming, expensive, and prone to human error. For the Ghana campaign, thirty Red Cross volunteers were trained for 2 days on the use of handhelds. They were able to complete 2400 surveys in 3 days (the traditional paper method would have yielded 200 surveys). Survey data was turned in at noon on the day following the immunization campaign. Analysis was completed promptly after the data was hot-synched into a computer and then written up as a complete report for the Ministry of Health by 5pm. The speed and ease of gathering this epidemiological data was unprecedented. In Kenya and Uganda, the project loaded 80 handhelds with medical reference materials and a short survey on Malaria, and distributed to 6th year medical students and physicians for clinical use in a variety of settings. The information package contained (1) medical textbooks, (2) HIV/AIDS, TB, and Malaria guidelines specific to Kenya and Uganda, (3) a medical calculator, (4) the WHO Essential Drug List 20, and (5) an essential drug list specific to Kenya and Uganda. To illustrate the value of just one of the elements of the information package, thousands of doctors and nurses in Africa are not aware of and do not have access to HIV/AIDS and other clinical guidelines that are critical in diagnosis and treatment. The project will collect survey data and will monitor how the participants use the handhelds.

III.A.6 Telemedicine By telemedicine, we refer to the use of ICT for (1) remote diagnostic and treatment of diseases or injuries, (including for emergency treatment), and (2) improvement of health care in rural/isolated places through services provided remotely in collaboration with medical personnel in situ.21 Various factors make telemedicine attractive in the context of HIV/AIDS: (1) its high prevalence, both in numbers of people suffering from AIDS as in those diagnosed as HIV+ - they all need medical attention; (2) the widely dispersed geographical distribution of the pandemic – it´s not an urban disease; (3) the lack of sufficient medical personnel and resources in rural/isolated places in many developing countries; (4) the impact of HIV/AIDS on the numbers of medical professionals, provoking a dearth of qualified personnel precisely in those countries most affected. There are economic and technological obstacles which place significant challenges to the expansion of telemedicine services in poor countries, and most severely affected HIV/AIDS countries are indeed quite poor. These need to be viewed against the benefits, some of which are: -

Consultations with specialists who otherwise would not be available (particularly in remote zones)

Lower expenses for patients that do not have to travel or can to stay less time outside their place of residence for treatment – plus they will lose less money from their jobs or businesses.

20 21

Savings in hospital resources destined to patients that can be treated remotely

http://www.who.int/medicines/organization/par/edl/infedl11alpha.html

Telemedicine is conceived differently according to the institution, and can include services related to medical training, research, institutional management and even information about a healthy lifestyle (ie. nutrition, hygiene, exercise. etc.). We are using telemedicine in a more restricted view of clinical-care involving medical personnel from remote locations, enabled by ICT.

24 -

Higher efficiencies in dispensing some treatment in mobile medical units vs. enlarging urban or regional hospitals (eg. example in costs of construction and maintenance between these two types of health services dispensers).

Increased job opportunities locally for technicians, paramedics and other nondoctors

Higher qualified support for local medical staff in remote areas, resulting in better medical care and a higher job satisfaction for the providers.

Possibilities for remote volunteer collaboration of medical professionals on the basis of solidarity.

IDRC Telemedicine Project – Uganda [IDRC 2001] This project, which has a specific HIV/AIDS component, was developed to respond to the growing need for •

medical and health workers to access and share health and medical information;

•

enabling community based medical students, doctors, nurses and health workers to gainfully participate in Continuing Medical Education (CME).

•

delivering quality medical diagnostic and consultative services at a distance to disadvantaged communities and also to respond to need by doctors to access and participate in the medical research of others has also necessitated this project.

This project builds on two other projects. One is the IDRC-assisted HealthNet project which provides e-mail services to about 200 health workers and institutions in Uganda. Healthnet in turn benefits from the range of increased services that this project provides provide. The other is IDRC’s support to the Mulago Referral and Teaching Hospital and Butabika Hospitals in Uganda, which demonstrates the transfer of medical information in the form of static/video images and video conferencing. The video conferencing sessions are aimed at facilitating interactive seminars, training and consultation. Doctors and nurses at the two hospitals share their respective specializations with a view to limiting their own movement and the movement of patients.

III.A.7 Integrated Systems We have categorized elements of ICT utilization in the health front separately, to highlight various types of applications of the technologies. Often, ICT initiatives integrate one or more of the categories previously indicated. For example, portals and groupware include information repositories as well as the ability to communicate and set up specific networks. From a policy standpoint, it makes sense to design interventions that address the multi-faceted ICT applications in the fight against HIV/AIDS in an integrated fashion. The case below from Zimbabwe provides a good example of such an integrated approach. An integrated project: Health Informatics Program, Zimbabwe CDC AIDS [IDRC 2001] The HIV/AIDS program of the US, Atlanta-based Centers for Disease Control and Prevention (CDC) in Zimbabwe is part of the Global AIDS Program of CDC that includes

25 17 Africa countries. The program is quite extensive, and presents a good example of an integrated e-health programme in this country stricken by HIV/AIDS. As reported by one of its managers, “the overarching strategic goal of these projects is to help develop and support a systems view of the response to HIV/AIDS. Therefore, the focus has been on improving communication capabilities and the development of human capacity in the area of information management.” The program is comprised of primary prevention; surveillance and infrastructure development; and care and treatment. The surveillance and infrastructure development component includes: HIV/STI/TB surveillance, laboratory support, monitoring and evaluation, training and information management. The Zimbabwe program, including the ICT component, was allocated US$7 million just for 2001. The program addresses information needs of organizations involved in fighting AIDS and is developing systems to support the development of electronic and human networks. CDC develops physical infrastructure, as well as supporting organizational and human capacity building. The activities include: •

development of an integrated laboratory management system for the Zimbabwe National Public Health Laboratory System;

•

implementation of local area networks for the Ministry of Health and Child Welfare,

•

strengthening of HealthNet in Zimbabwe;

•

implementation of a local area network and countrywide communications link for the National AIDS Council;

•

implementation of a local area network and web-based activity database for the Zimbabwe AIDS Network;

•

strengthening of the University of Zimbabwe School of Medicine local area network and Internet access.

III.B ICT AND HIV-AIDS AS A DEVELOPMENT PROBLEM HIV/AIDS is posing a severe development challenge in some countries, particularly in Southern Africa, as noted in the introduction. UNDP believes that the epidemic´s advance can no longer be perceived as simply a health-sector concern. HIV/AIDS is undermining economic stability in hard-hit countries, cutting labour productivity, leaving orphans and school dropouts behind as parents and teachers die and contributing to famine in regions where the disease has killed millions of farm workers. [UNDP 2003] The pandemic is, in effect, crippling governance structures that had varying degrees of solidity, including the ability of the Government to render normal services to the citizens. UNDP has a distinctive role within the UN System in helping developing country governments meet the tremendous governance challenge posed by the disease. All relevant institutions, resources, and energies are being called to contribute to lessen the wide impact of the pandemic. The UN Secretary General Kofi Annan noted in his August 2002 report on progress towards implementation of the Declaration of Commitment on HIV/AIDS that “UN agencies, funds and programmes are urged to further expand their support to HIV/AIDS efforts with a view to transforming interventions proven to be effective into large-scale projects”. [Schumacher 2002].

ICT constitutes one of those relevant resources called for above, and is needed for more than addressing the direct medical and psycho-social effects of HIV/AIDS - however indispensable those uses are. It should be increasingly viewed as a set of tools to help mitigate the effects of human capital loss and confronting the wider development picture in the HIV/AIDS context. These technologies can support in the provision of public and social services, e.g. health, education or public administration. They also need to be applied to stimulate economic activity and income generation. In short, ICT is a powerful cross-developmental tool, and as such it needs to be harnessed in efforts to prop up the human development picture of those countries For example, ICT should be considered in the design and implementation of strategies of human capacity replenishment and re-building. In some of the worst-affected countries there is an urgent need to stem the rapid crippling of the capacity of the public service to deliver [Schumacher 2003]. The rationale for applying ICT is simple: with less people to carry out services, resources have to be used more effectively, as indicated in figure 1. For instance, if there are less teachers, they need to be better supported and more productive – and ICT can help them with teaching materials, training about teaching itself, monitoring and pedagogical support, and collaboration from other teachers and educators.

Fig 1: changes in process to achieved desired outputs with reduced inputs

Inputs Reduced

Process Innovation Higher productivity Inclusion of other resources

Outputs Equal or increased

Network approaches should also be integrated into such strategies. By this we mean the ability to connect individuals and resources in nearly-real time for specific objectives. Digital technologies and infrastructures are making networks ubiquitous in the North, because of their added value in (1) combining resources from any place in the world, in particular information resources, (2) decentralizing operations and activities – and providing the proper tools to manage them; and (3) the ease on integrating other actors from anywhere in the world – this is particularly valuable in operationalizing the solidarity of individuals. In fact, mainstreaming ICT into development cooperation means to a large extent to “net-work” development cooperation. An issue that cuts across any ICT use in development is the problem of universal access in severely resource-constrained places. Realistic possibilities for accessing information and communications services anywhere need to be examined. This leads us to the question: “What are the best ways to aggregate local demand for ICT services in order to find adequate supplies to common needs?” Making reference to transportation to illustrate the point, a road to a village is not built simply to respond to a “health” need, or an “agricultural” need – it responds to a

27 combination of local needs, and it will be used (simultaneously) for various purposes. This same approach needs to be prioritized when it comes to ICT. Connectivity (“the pipes”) should be configured on the basis of aggregated demand for a community. Public access points (like community telecenters) ought to be promoted to offer a minimum level of information and communication services serving all kinds of local development purposes – like the ones described in this paper. This section touches upon key areas of socio-economic impact of the pandemic, ie. governance, education, and economic activity. It suggests ICT applications that could be considered in the design of new programmes, or integrated in existing ones. It is illustrative and therefore does not scan across all development impacts of HIV/AIDS (eg. agriculture, human rights, gender equity, etc.). A comprehensive review of ICT applications across the entire development spectrum affected by the pandemic is outside the scope of this paper, and could be the subject of additional research.

III.B.1 Governance and Government Governments have only recently began to ask the question of what is the impact of HIV/AIDS on their ability to perform key functions. The first and so far most specific assessment of the impact of HIV/AIDS on the public sector is the recently finalized report on Malawi. The severity of the evolving capacity gap has also not been fully reflected/recognized in main UN publications related to HIV/AIDS issues 22. [Schumacher 2003] We face a significant dilemma when assessing the contributions of ICT to Governance in the countries worst affected by HIV/AIDS. On the one hand, they are among the poorest in the world and their governance structures are in disarray (including decreasing pools of qualified human capital to carry out government services). They lack in technical infrastructure, and also in human and institutional capacity to make use of whatever ICT tools should become available. On the other hand, ICT can help increase productivity substantially in many avenues of public service (as they have done extensively in the private sector and for NGOs), allowing to do more with less. These technologies may indeed prove essential to counteract the shortages of staff in public services at a time of increased requirements for many of these services (eg. more AIDS orphans, increased health care needs). Sometimes the combination of urgent needs and lack of traditional ways to address have resulted in technological “leap-frogging”. In some developing countries, mobile phones lines grew much quicker and became more numerous than fixed phone lines because of (1) existing need/market, and (2) the impossibility of laying out the infrastructure for the latter in reasonable periods of time. So, how will it go? Will sheer necessity prevail and stimulate innovation and creativity to integrate ICT into re-drawn governance schemes? Or, rather, is e-governance is an irrelevant, “pie-in-the-sky” concept in the face of collapsing states? We cannot predict the future, but instead will explore possibilities for ICT applications in governance – particularly with an eye out for capacity replenishing programmes. An analysis of conditions that need to be met to successfully put in place any of the measures below is not carried out in this paper. However, a higher level of accessibility to 22

For example, the UNDG Guidance Note on HIV/AIDS or the Report of the Secretary General on Achievements made towards the UN General Assembly Special Session commitments.

28 information and communication services is generally a pre-condition, together with the minimum capacity of ICT intermediaries (eg. a clerk in a Ministry, a volunteer at a community telecenter) who will most often act as the first/last miles of information between Government and the citizen. We follow Nath’s categories[2002] for greater use of ICT in governance processes to relate e-governance to HIV/AIDS contexts: A. Purely Technical role. This refers to automating largely mechanical governance tasks and thereby improving efficacy of governance processes. •

On the “back-end” or internal government functions, ICT can vastly improve access and exchange of information by public officials (in the Administration, Parliament, courts, etc.). This can be achieved via electronic communications and shared information repositories with the proper interfaces (eg. through intranets and extranets). In comparison with situations where hard copies of documents and telephones constitute the state of the art for information and communication services, the increases of productivity would be substantial. This would be even more the case for newly hired staff or those that have not fully learned the “ropes” of Public Administration operations, as their learning curve would shorten – and reach higher levels of performance.

•

On the “front-end” or direct services to the citizens, we can think about automating and placing online some routine processes like filing of tax forms, property (including land) registries, government bids and purchases, permit applications, etc. This requires its own set of back-end structures, ie., automation is required in the entire process, not just the side that the public sees. It would, however, allow for provision of a higher quantity of services (and probably with the same or superior quality) per civil servant in those departments.

B. Facilitating / Supportive role. This is about using ICT to complement existing efforts/ methods to improve governance. A simple example, fairly spread out nowadays, is the placing of government/public-domain information on a website (laws, studies, statistical data, state/local budgets, etc.). ICT also extends existing avenues for people to communicate with government officials (eg. through e-mail) and participating more widely in policy making (electronic discussions, frequent polls). This role contributes to a more open, transparent and participatory governance. It will result in savings in terms of the time and resources used in the provision of information to the citizenship, and/or, and it will allow for less people to perform these functions. It may however, increase the interaction with officials and policy-makers (and their support structures) as a result of a more active citizenship and more participatory methods of policy making. C. Completely Innovative role. This involves initiating new services and new mechanisms to improve governance, or in the cases of countries severely affected by HIV/AIDS, to cope with failing governance aspects. Let us concentrate on the latter, for brevity´s sake, indicating what some of those new services would be: •

Accelerated/on-the-job training for new government employees . Entirely new training curricula may be developed, supported by ICT (eg. for creation and distribution of educational materials, introduction of monitored self-paced courses, to support the trainers, etc.). Online delivery of some of these courses becomes attractive, allowing for (1) those outside major cities to access the

29 trainings, and (2) a reduced necessity for physical class-room time (since there is a shortage of “experienced” staff to serve as teachers). •

Mentoring and support to new/junior staff . Electronic communications facilitate individual mentoring and monitoring of newer staff by some experienced civil servants. Virtual communities also help newcomers as spaces for the exchange questions, experiences and information, and becomes a type of group selfsupport mechanism – which, by the way, also helps the more senior staff.

•

Decentralization of government functions . When there are severe problems in rural and remote areas, local government must be empowered to act. ICT is necessary for the timely access to information and the efficiency of communications needed by decentralized government functions.

•

The government intranet and extranets mentioned above become even more practical for a township councilor 200 km. away from the nearest major town.

New decentralized services will also required training of local staff, and for this purpose the practicality of ICT described in the previous point becomes even higher - the more dispersed and numerous learning points, the more valuable a national governance training network will be.

New substantive support bureaux, set up on a web site by the central government to help and support those that are discharging new decentralized Administration functions – there could be one or more each for Trade, Registry, Education, Health, Agriculture, Taxes and Fiscal Issues, Industry, Agriculture, etc.

“Mobile e-governance.” Services to people living with and affected by HIV/AIDS that cannot leave their homes regularly. Social workers become the first/last mile of e-governance connectivity with mobile ICT devices (a notebook computer, even a PDA), and visit these people in their homes or neighborhood centers to help them do a variety of things: o

carry out electronic transactions, like voting, receiving benefits, filling out forms, surveys, etc.

receive updated information about medical treatments, and new services available to them.

provide their voice about civic issues, policy-making and political process, via electronic communications that would be sent to the appropriate recipients.

file grievances, and governmental body.

provide

their

feedback

the

concerned

Establishment of a national comprehensive HIV/AIDS information management system (where there is none) to support the Government in managing the pandemic, which would include: o

data sets on morbidity, mortality and absenteeism, together with applications (like Geographic Information Systems) to facilitate data entry, display/reporting and monitoring of the situation.

a comprehensive knowledge base for HIV/AIDS to enable relevant government staff to develop better understanding of the effect of the

30 pandemic in various sectors. It would bring together information on successful experiences, and would help in sharing expertise and understanding within and between countries. o

a mapping and clearing-house of the organizations in the country, including networks, engaged in responding to the HIV/AIDS crisis. Best practices and research could be posted by them, enabling cooperation. Organizations from other countries would also be identified, in order to facilitate networking outside the country as well.

Ultimately, e-governance in any socio-economic context must serve to strengthen the “social capital” of elected representatives, stakeholders and citizens, working together to improve the governance of communities through electronic means. This also applies for countries severely affected by the pandemic. Here, the joint efforts of all sectors are even more needed, and governance becomes a multi-sectoral process that clearly moves beyond the realm of government services (which are usually insufficient to begin with). NGOs, for example, which often are relied upon to deliver social services, need to attain sufficient capacity to help deliver e-services, given their local presence and knowledge of the community. Two last points related to the possibilities of e-governance in the countries of our concern. One is that the availability of certain electronic services 24 hours a day, 365 days per year, is an added factor for increased productivity in government, again in the face of dwindling human capital (plus it happens to be quite convenient for the citizen). The second is about the propensity of that citizen to use electronic means when we can assume that s/he may have never touched a keyboard before. We can only venture that if the electronic ways of submitting that form or obtaining that permit are truly better (ie. faster, more reliable, more effective, cheaper), and if our citizen becomes aware of it, s/he will probably find a way to use the new means – perhaps through a son/daughter, a colleague or a volunteer at the local community telecenter. Illiterate farmers figure out ways to get ICT-sourced information on the best prices paid for their produce, after all. People know when technology is worth using, and at the very least should have the choice of using when they decide that it is worth the extra effort. International AIDS Economic Network (http://www.iaen.org) The International AIDS Economic Network (IAEN) is an example of a ICT-based resource that helps Governments in determining policies on HIV/AIDS issues. It focuses on the economics of HIV/AIDS prevention and treatment, providing data, tools, and analysis for researchers and policymakers working to define and implement effective AIDS policy. It is comprised of a network of researchers, policy makers, programme administrators, development agencies, universities and NGOs. Topics treated in the past by IAEN include: •

Global Allocation of HIV/AIDS Resources (latest in October 2001)

•

Cost-effectiveness Analysis of HIV/AIDS Treatment and Prevention.

•

Financing Anti-retroviral Therapy in Developing Countries

•

The socioeconomic impact of HIV/AIDS in Asia

•

AIDS and agriculture

•

Cost-effectiveness of HIV/AIDS prevention

31 Topics considered for future research and discussion include: •

Social and economic determinants of the spread of HIV/AIDS (debt, structural adjustment packages, etc.)

•

Evaluating socioeconomic impact research as a policy tool The economic aspects of research on AZT and pregnant women

•

Assessing the impact of HIV/AIDS on education

•

Economics of AIDS Vaccines

III.B.2 Education Education is a fundamental public service, and one where the impact of HIV/AIDS is easily seen: the number of teachers is decreasing and more children are orphaned or not cared for by their parents. Major programme interventions that address capacity replenishment should include components to support the educational system. Many of the uses of ICT which we have explored before are valid here. The guiding principle is that ICT can make educational processes more efficient, support the provision of inputs to teaching and learning, and enrich the quality of education. As in the case of health systems, ICT can be used to set up information repositories for education, facilitate communication among teachers, school administrators and other educational stakeholders. It can be harnessed for collaboration, through networks. It can, very importantly in the time of HIV/AIDS crisis, support the training for teachers. ICT can also support educational governance. A Ministry of Education can distribute information to schools, communities and relevant stakeholders. It can also set up a special support bureau to help the significant number of new teachers that may be incorporated. Electronic platforms can receive ideas, feedback and propositions from teachers and parents to inform upstream decision-making. Finally, ICT can help universities and large schools to be better managed, which is important because just as there are less teachers, so will there be less people to deal with the administrative tasks of the schools. Since many of the ICT uses indicated in the previous sections are applicable in the field of education as well, qnd to avoid repeating them, we will only present four specific possibilities for ICT elements of national programmes to support education in HIV/AIDS ravaged countries: •

Creation of a national education web portal by the Ministry of Education in collaboration with other entities like NGOs. The portal would contain substantial amounts of educational resources and tools for teachers and other educators. It would also facilitate networking and collaboration among educators, plus it would offer provide information on events, opportunities, scholarships, etc.

•

Establishment of a virtual teacher training academy. This would serve to complement the training programmes for new teachers, which may need to be accelerated in certain situations where there are severe shortages. Much as in the case presented in the “Governance” section, online delivery through the virtual academy would allow for self-paced courses which would be taken as onthe-job training. This virtual academy would also reduce the need for in-situ classroom time (allowing the teacher trainers to work with more trainees), and would in fact support teacher trainers with materials and guidance.

32 •

Online Volunteer “Teacher2Teacher” programme. This initiative would allow experienced teachers around the world to establish a one-to-one collaborative/mentoring relationship with teachers in the country. Collaboration by the online volunteer teacher could entail providing educational support materials, exchanging experiences, or doing online research. It could also lead to collaboration among their students. Eventually, the collaborative relationship would lead to the point where both teachers would be online volunteers, as there is always much to learn from one another.

•

Open Source against HIV/AIDS. This would be a programme aimed at introducing Open Source software as an alternative software platform for the educational sector, with its corresponding savings in money and dependencies on commercial outfits. Open Source software programmers (eg. “hackers 23”) would collaborate around the world as volunteers to create and adapt the appropriate suite of base programs and applications. This software would be widely taught at the university and technical academy level, to allow for new generation of computer professionals to choose to work with Open Source products.

World Links (http://www.world-links.org) World Links is a a global learning network linking thousands of students and teachers around the world via the Internet for collaborative projects and integration of technology into learning. Initiated by the World Bank, and eventually going on to become an independent foundation, it has undertaken programmes in 26 countries and directly supported over 1,000 schools. Its core added-value is its training program, designed to help teachers and students learn to use ICTs to improve teaching/learning. In addition, World Links is a pioneer in the dual use of school computer labs as community telecenters. Special collaborative projects with schools that expressed interest in learning more about HIV/AIDS were carried out in 15 schools across Ghana, South Africa, Uganda and Zimbabwe. Over a period of 3 months, participants not only learned more about the disease and how to prevent it and also cope with it locally. They also developed action plans to achieve some impact in the community, eg. to alleviate the effects on orphans who were not in schools. Successive phases of the projects included linking each school with a local HIV/AIDS organization, to build the ICT capacity of that organization and encourage HIV/AIDS experts to assist in preventive efforts and in training peer educators. [Bloome, 2002] The World Links approach contains an interesting combination of elements in relation to the support to educational systems in HIV/AIDS heavily affected countries, and merits careful consideration, because: •

it facilitates cooperation among teachers, students and even schools from North and South. This is helpful in establishing connections and avenues of support to resource-constrained teachers and schools in those countries.

Hackers are not the “bad guys” that create computer virus and damage data and systems around the world; those are the “crackers”. Hackers are software “artists”, who value their craft and the quality of their products. “The Hacker Ethic”, by Pekka Himanen, describes the hacker phenomenon in depth.

33 •

it works with teachers to integrate ICT into teaching/learning – thus it provides teachers with additional effective and efficient ways to provide quality education.

•

It has turned schools into de-facto community telecenters which can then serve other information and communication needs of the community (including those related to HIV/AIDS from doctors, nurses, PLWHA, etc.)

•

thorugh special projects on HIV/AIDS, it can make teachers and students more aware of HIV/AIDS issues and mobilize youth for action in their community.

III.B.3 Income Generation Poverty worsens the impact of HIV/AIDS and it also results from the disease, in a vicious circle. While there are many dimensions to poverty, one of the key ones has to do with economic activity and income generation. ICT contributes to just about every aspect of economic and productive activity, particularly in the more developed or “networked” countries. In this section, we will only examine ways in which ICT can directly help to support productive activities and increase/maintain family incomes in the HIV/AIDS context. ICT makes it possible for people that live with/are affected by HIV/AIDS to continue to work online and receive an income. While costs and lack of infrastructure may not exactly permit “tele-commuting” at the level practiced in rich countries 24, measures can be taken to increase the possibilities and allow for these people to continue to be functional and working members of society. Community telecenters can provide special services to tele-commuters in these countries. Larger companies can make arrangements with their seropositive employees to perform some work from home, and give them the ICT tools with which to do so. 25 And of course, employers can also provide special support for employees affected by the virus and their families (eg. providing retroviral drugs). The State itself can be a powerful contributor to promote and support work for people living or affected by the disease that can be carried out partly online. This will generate additional economic activity, more tax revenues, while the individuals employed in this manner will be more satisfied and better able to tend to his/her needs. The State can establish special programmes in partnership with the private sector, and as a large employer itself can give example by setting up work opportunities either for employees who must care for people with AIDS, or those who themselves are infected. E-commerce is difficult to put into motion when many of the basic infrastructure, financial and legal conditions are not in place. However basic components of e-commerce, as is simply displaying goods and products in a web site, together with contact information and prices, is simple and economical. Cooperatives can pool resources together to 24 25

Most telecommuters in the North have a computer and connection to Internet at home.

There are many types of potential telecommuting job categories. In the US, the Kentucky Department of Vocational Rehabilitation website, lists as examples: Data entry, Medical transcription, Billing, Dispatching, Appraising, Court transcription, Claims processing, Filling orders, Scheduling, Researching, Computer programming, Record keeping, Writing, Sales, Customer service, Bill collections, or Word processing. The site presents telecommuting as a viable work option for people with chronic health disabilities (like HIV/AIDS) and their employers. http://kydvr.state.ky.us/programs_services/telecommuting.htm

34 make better uses of e-commerce opportunities for direct sales and transactions. They can also work with intermediary organizations in the North that will either buy or place their products – some of these intermediaries will be normal commercial operations, and others will be oriented by principles of solidarity or cooperation (the example at the end of the section is one such case). Community telecenters can also offer services oriented towards income generation, through some of their standard services. One of the simplest but most frequent applications of ICT in poor settings is for accessing information on prices paid for agricultural produce, animals or fish catch in various markets, in order to bypass intermediaries and sell at better conditions. When community web sites are set up, they usually contain online job listings and marketplaces, where people infected/affected by the virus could look for work. People can also receive computer training in the telecenters, picking up skills that make them more employable. Finally, NGOs and other associations specially focused on the effects of HIV/AIDS could be exploring online work opportunities with overseas employers, eg. for the kind of data processing or customer attention activities that are often carried out in developing countries because of their lower costs. Companies in the North with significant Corporate Social Responsibility programmes could be approached, particularly those that have joined the UN Global Compact, which was set up by the same champion figure as the person that has done the most to press emergency responses to HIV/AIDS within the UN: the Secretary General, Kofi Annan. Aid to Artisans (http://www.aidtoartisans.org/) Aid to Artisans (ATA) is a non-profit organization that offers practical assistance to artisan groups worldwide, working in partnership to foster artistic traditions, cultural vitality, improved livelihoods and community well being. Through collaboration in (1) productdevelopment, (2) business skills training, (3) development of new markets, and (4) small cash grants, ATA provides sustainable economic and social benefits for craftspeople in an environmentally sensitive and culturally respectful manner. ATA was founded in 1976 by James Plaut, former Secretary-General of the World Crafts Council, and his wife, Mary. Over time, the organization has transformed itself into a growing organization with a yearly budget of $4.5 million and a comprehensive menu of training, design and marketing services. ATA helps artisans move into new markets with competitive products and management skills. Many relationships created by ATA between U.S. and European markets and artisan producers have lasted for over a decade and continue to provide important and sustaining salaries for artisans in many countries. Another of ATA’s key goals is to reinvigorate craft traditions in danger of disappearing. When such traditions can be adapted slightly or directed into saleable merchandise categories, the skills and the aesthetic behind them become important incomeproducing assets and are therefore much less in danger of dying out.

IV. CONCLUSIONS

35 The HIV/AIDS pandemic is a long-term catastrophe that has not yet peaked. Even so, it already figures as one of modern times’ Horseman of the Apocalypse. Fortunately, it has received increased attention in the last 3 years, coupled with increased funding (eg. the new Global Fund to fight AIDS, Tuberculosis and Malaria has received pledges of slightly over US$ 4.5 billion, up to 2008, 26). However, and given its magnitude, there are significant shortages in resources to address it. Information and communications technologies are a highly valuable set of tools against the effects of HIV/AIDS. There are two major reasons for this. Firstly, there is still no cure nor vaccine at hand. Thus, it appears that, as AIDS.org claims in its home page, information is indeed the most powerful weapon we have in the fight against HIV/AIDS – and ICT are excellent informational tools. Secondly, and particularly in hard-hit countries, ICT can help increase efficiencies and generate new resources in a context of decreased inputs and where the needs for public services of the population are increasing. We have explored strategies for ICT use in the context of HIV/AIDS, and indicated how these technologies can bring significant added value in accessing information, generating knowledge and communicating them both via electronic networks. Since HIV/AIDS is a major development problem, we have gone beyond its health dimensions and looked to governance, education and income generation in examining a more complete set of ICT applications for the problem. Special consideration was given to situations, as those in most countries in Southern Africa, where the disease’s impact on human capital alone is so strong that major capacity “replenishment” initiatives will soon get under way. The “C” in ICT is very important in this context, and it stands for “communication”, though it also has a lot to do with “collaboration” and “coordination”. Fast, ubiquitous communications allow for the exchange of information and generation of knowledge for more informed decisions. They also form the basis of networks, which facilitate the collaboration of people and institutions around the world. And software tools serve to coordinate activities organized and decentralized through networks. Yet, as warned by Driscoll (2001), “While ICTs do provide access to knowledge, they cannot provide direct benefits such as drugs and care to those currently afflicted, nor can they address the pressing needs for food and shelter of surviving family members .” While this may sound obvious, it is indeed a valid warning. The role of ICT for development (eg. in the fight against HIV/AIDS) in the mind of many people is not clear. Those that expect some kind of miracle cure or panacea from the “magic” new technologies will be disappointed. It is important, therefore, to reiterate that ICT are just tools, tools for information. Their suitability or viability simply needs to be assessed with every case – not only in terms of needs, but also in terms of opportunities. But let us not discount the power of ICT either: information saves lives. In financial terms, the level of resources directed at ICT components should be a small, even tiny fraction of the overall resources dedicated to programmes and activities. The advantage is that ICT can present creative alternatives to the normal way of approaching problems, and furthermore that it can help leverage further resources – like, for example, volunteers contributing through networks across the world.

http://www.globalfundatm.org/contribute.html

36 HIV/AIDS is the first major epidemic of the Network Society. New information and communication technologies are at the core of this new era, and should be more widely used to confront the disease and its wider developmental effects. Networks are an expanding form of social organization powered by ICT. They are already providing the structure on which to dynamically anchor joint action and collaboration of people/institutions across the globe. And it is precisely the organized response of the global community that will be needed to solve the imperious global governance problem that HIV/AIDS has become.

V. BIBLIOGRAPHY AND LINKS TO RESOURCES Documents ACEVEDO, Manuel (2003). Volunteer Networking and Capacity Development. [online]; Working Paper (Draft); United Nations Volunteers; Bonn, Germany. <http://www.unites.org/html/resource/resource.htm> African Information Society Initiative, AISI. (2000). “Use of ICT in the fight against HIV/AIDS: Discussion summary of the ICTs Focus Group of the African Development Forum 2000.” [online] AISI, Economic Council for Africa, Addis Abeba; [Accessed 2 June 2003] < http://www.uneca.org/aisi/initiatives-ict&AIDS.htm> ANNAN, Kofi. (2000) We the Peoples: The Role of the United Nations inthe 21st Century. Millennium Report. New York, United Nations Dept.of Public Information. 80 p. ISBN 92-1100844-1. CASTELLS, Manuel. (2001). La Galaxia Internet: Reflexiones sobre Internet, Empresa y Sociedad. Barcelona: Plaza & Janés. 316 p. ISBN 84-01-34157-4 DaimlerChrysler. (2001) “DaimlerChrysler South Africa Introduces HIV/AIDS Workplace Strategy.” [online] DaimlerChrysler; Stuttgart, Germany; [Accessed 18 June 2003] <http://www.daimlerchrysler.com/index_e.htm?/news/top/2001/t10618_e.htm> DRISCOLL, Libbie. (2001). HIV/AIDS and Information and Communication Technologies. [online] Final Draft Report to the International Development Research Centre (IDRC); Ottawa Canada. [Accessed 7 June 2003] < http://web.idrc.ca/uploads/userS/10451618830HIV-ICT_Final_Report-fixed-T1_fonts.pdf> DOT Force. (2002) Health, HIV/AIDS and Information and Communication Technologies: A Needs Assessment. [online]; May 2002; [Accessed 5 June 2003] Digital Opportunity Task Force, Washington/New York. 52 p. <http://www.dotforce.org/teams/health_hivaids_ict_report.doc> ECOSOC. (2003). Report of the Secretary General. First annual report of the UN Information and Communication Technologies Task Force. [online]; ECOSOC E/2003/56, 28 April 2003; [Accessed 22 May 2003]; United Nations, New York. 20 p. <http://www.unicttaskforce.org/community/documents/764023199_UNICTTF_1stReport.p df>

37 FALOBI, Omololu. (2001). “ICT for Health: Combating HIV/AIDS in Nigeria through the Nigeria-AIDS eForum project”. [online]; 14 April 2001; [Accessed 22 May 2003]; International Institute for Communications and Development (IICD), The Hague. <http://www.iicd.org/base/print?lng=1&nav=29&sub=300&template=story_detail&id=92> GASCÓ, Milagros. (2002). Impacto organizacional e institucional de proyectos de gobierno electrónico [online]. Paper presented to the “I Catalonian Congress of Public Management” (Barcelona – Spain, 26-27 September 2002). [Accessed 11 June 2003]. (http://www.congres.lluert.net/comunicacions/grup3/Gasco.pdf). HIMANEN, Pekka. (2002). The Hacker Ethic and the Spirit of the Information Age. With Linus Torvalds and Manuel Castells. New York: Random House. 232 p. ISBN 0-375-50566-0. Infomed. “Project of a Telediagnostic Network for Cuba’s Nacional Health System.” [online] (in Spanish); National Health Telematic Network of Cuba (Infomed), Havana. [Accessed 27 May 2003]. <http://www.sld.cu/telemedicina/>. KLOFKORN BLOOME, Ann. (2001) Schools Think About HIV/AIDS: A World Links Online Collaborative Project. [online] TechKnowLogia, July/August 2001. [Accessed 10 June 2003] <http://www.techknowlogia.org/TKL_active_pages2/CurrentArticles/main.asp? IssueNumber=12&FileType=HTML&ArticleID=295> MINVI, Siviwe. (2002). “OneWorld radio network to fight AIDS”. [online]; 28 June 2002; [Accessed 2 June 2003]; International Institute for Communications and Development (IICD), The Hague. <http://www.iicd.org/base/print? lng=1&nav=29&sub=300&template=news_detail&id=1876> NATH, Vikas. (2001) Digital Governance.org: Building and Sustaining Democratic and Accountable Governance Structures using ICT. [online] Digital Governance.org web site; [Accessed 6 June 2003]; < http://www.cddc.vt.edu/digitalgov/gov-menu.html> Regency Foundation. Telecomunicaciones y salud. [online]; (in Spanish, original English); In Telecommunications in Action; Regency Foundation, London. [Accessed 31 May 2003] <http://www.regency.org/t_in_act/pdf/spanish/health.pdf> Russian Federation. (2002). Oportunities for Telemedicine: Practical Examples. International Telecommunications Union, World Telecommunications Development Conference WTDC-02, Istanbul, 18-27 March 2002; [Spanish translation, Russian original] SATELLIFE (2002). Satellife PDA project: Moving Information into the Hands of Those Who Heal. [online]; [Accessed 4 June 2003]; SATELLIFE, Watertown (Massachusetts), United States. <http://pda.healthnet.org/> SCHUMACHER, Dagmar. (2003). Volunteer support to capacity development/capacity replacement in the time of HIV/AIDS. A case in the southern Africa region. Working Paper (Draft); United Nations Volunteers; Bonn, Germany. SEAMEO. (2002). SEAMEO-UNESCO Project on ICT & HIV/AIDS Preventive Education in the Cross-Border Areas of the Upper Mekong Region. [online] [Accessed 27 May 2003] Southeast Asian Ministers of Education Organization, Bangkok. <http://www.seameo.org/vl/library/dlwelcome/projects/hivaids03/hiv03.htm>

38 UDDIN, Nazim; SACK, Jean; KHAN, M. Shamsul Islam. (2001); Use of electronic communication in management of the Dengue Epidemic in Bangladesh; Dissemination and Information Services Centre (DISC); ICDDR,B: Centre for Health and Population Research; Dhaka, Bangladesh. UNAIDS. (1998) Technical Resource Networks and Intercountry Teams. UNAIDS PROGRAMME COORDINATING BOARD (Document UNAIDS/PCB(6)/98.5); Geneva. UNAIDS/WHO. (2002). 2002 AIDS Epidemic Update. [online]; English original, December 2002; [Accessed 25 May 2003]; UNAIDS, Geneva. 42 p. ISBN 92-9173-253-2. <http://www.unaids.org/worldaidsday/2002/press/update/epiupdate2002_en.doc> UNDP. (2002). HIV&AIDS and Poverty Reduction Strategies – a Policy Note. New York. UNDP. (2003a). UNDP’s Role in the Response to HIV&AIDS – a UNDP Factsheet. New York. UNDP. (2003b). Results: HIV/AIDS. New York. WARUINGI, Lucy. (2000). Breaking the Silence on HIV/AIDS through ICT. Internal Report; United Nations Volunteers, Bonn, Germany. Web sites/Organizations Aid to Artisans. <http://www.aidtoartisans.org/>. Hartford, (Connecticut), United States. AIDS Education Global Information System (AEGIS). <http://www.aegis.com/>. San Juan Capistrano, (California), United States. AIDS.Org. <http://www.aids.org>. West Hollywood, (California), United States. Fundación Huésped. <http://www.huesped.org.ar/>. Buenos Aires. HealthDev. <http://www.hivnet.ch/aids98/home.html>. Electronic forum moderated by Fondation du Présent, Geneva. Health InterNetwork Access to Research Initiative (HINARI). <http://www.healthinternetwork.org/scipub.php?lang=en > Health Internetwork, World Health Organization, Geneva.

Ministry of Education of Chile; Education Portal <(http://www.mineduc.cl/index_portal.htm)>. Santiago de Chile Nigeria-AIDS eForum. <http://www.yahoogroups.com/group/nigeria-aids>. Electronic Forum. OneWorld Radio Aids Network. <http://www.oneworld.net/radio/aids/>. London. Regional AIDS Training Network (RATN). <http://www.ratn.org/>. Nairobi. SATELLIFE. <http://www.healthnet.org/>. Watertown (Massachusetts), United States.

UNAIDS, <http://www.unaids.org> , Geneva. United Nations Development Programme; UNDP’s database on good practices in ICT and HIV&AIDS;. <http://www.sdnp.undp.org/ictaids/browse.html> New York. United Nations Development Programme; HIV/AIDS Practice Area web site ; < http://www.undp.org/hiv/> New York. UN Economic Commission for Africa, http://www.uneca.org , Addis Ababa, Ethiopia. UN Volunteers/NetAid Online Volunteering service. <http://www.netaid.org/ov>. Bonn (UN Volunteers), New York (NetAid Foundation). World Links <http://www.world-links.org>. Washington D.C. YouandAIDS.org, <http://www.youanaaids.org>, UNDP, UNAIDS; New Delhi.

VI. ANNEX : ADDITIONAL EXAMPLES

Health- Information HealthNet (http://www.healthnet.org/) HealthNet is one of the pioneer global information services on health, working through satellite communications to provide electronic publications, access to the Web, and discussion groups, including those related to HIV/AIDS, to more than 10,000 health professionals worldwide. It started to operate in 1989, and one of its early flagship services was to provide access to information on the Web to health professionals who only had e-mail (web content would be retrieved and sent to the requester as text in an e-mail message). Healthnet is a programme of SATELLIFE, an initiative using satellite communications to support health practitioners in the developing world 27. HealthNet has a special emphasis on the HIV/AIDS pandemic, offering a suite of related information resources on its web site: (1) publications, (2) news and updates, (3) other information centers on HIV/AIDS publications, (4) virtual communities and discussion groups. Starting as one of Africa's first e-mail networks, HealthNet continues to provide viable solutions to information poverty for doctors, nurses, researchers, medical students and other health care providers, who no longer have to work in isolation and can use the service to get information critical to their work, communicate with other health professionals and share experiences. AEGIS: AIDS Education Global Information System (http://www.aegis.com/) AEGiS began in the mid-1980s as a bulleting board service (BBS) that allowed people during the earlier onset of the epidemic to stay in touch with the latest news and information. It is an example of a grass-roots effort expanding considerably. It is currently registered as a non-profit corporation in California. It benefits from considerable support of volunteers, and has received numerous awards. AEGIS is one of the most comprehensive online resource for HIV/AIDS-related information. Through collaboration with many organizations and individuals, AEGIS offers a vast database of facts regarding the history, prevention and treatment of HIV/AIDS, with over 1 million files. Information is accessible through their keyword-searchable knowledgebase, which also takes visitors to other sources of information around the world.

The inspiration for SATELLIFE came in the mid 1980s from a renowned cardiologist and social activist, Dr. Bernard Lown. Prior to the creation of SATELLIFE, Dr. Lown accepted the Nobel Peace Prize in 1985 on behalf of International Physicians for the Prevention of Nuclear War, an organization he co-founded. Originally conceived as a symbolic counterpoint to the U.S. Strategic Defense Initiative (a military programme also known as Star Wars), Dr. Lown's vision for SATELLIFE was to use space as a platform - not for weapons of mass destruction - but for the exchange of life-saving information among health professionals in both developed nations and the developing world.

41 The information ranges from fact-sheets and short expositions on the basics of HIV/AIDS, all the way to scientific references, statistics and other publications. They link to wire services and press agencies to highlight the latest news related to the pandemic. There are links to many organizations dealing with HIV/AIDS, as well as to others who do not focus exclusively on the pandemic but which are involved in the pandemic. Extensive legal references are provided for the United States, including for court cases. Health- Communication One World radio network to fight AIDS [Minvi 2002] (http://www.oneworld.net/radio/aids/) The OneWorld Radio AIDS Network promotes the free exchange of radio programmes on HIV/AIDS between radio stations worldwide. A community of broadcasters, NGOs and activists, the network has over 100 members across the world. Globally, radio programming is being used to share experiences of AIDS and to give advice on reducing risk and supporting those living with HIV/AIDS. The medium can provide facts on HIV/AIDS in the face of fear and stigma to combat discrimination and prejudice. Radio is also critical in raising awareness and understanding of AIDS not just as a health and social issue but also as a political, development and human rights concern. Yet the wealth of AIDS awareness and other audio material produced by NGOs, government agencies and broadcasters is usually restricted to the geographical area where it has been produced and aired. It then often remains unheard by wider audiences. The Internet provides a solution to this problem. OneWorld Radio AIDS Network has a searchable database exchange of audio files that allows broadcasters and other programme producers to upload and download AIDS programming in any language on the World Wide Web. Radio stations around the world can then rebroadcast this copyright-free material or adapt it for their own audiences. Anyone with Internet access can listen to the programmes online at OneWorld Radio AIDS Network website. The OneWorld Radio AIDS Network website also includes news, training materials, funding information and other practical resources for national and community broadcasters, health educators and campaigners as well as people working in HIV/AIDS organizations, aid agencies and development NGOs. Nigeria-AIDS eForum project [Falobi 2001) (http://www.yahoogroups.com/group/nigeria-aids)) The Nigeria-AIDS eForum project is the internet-based news list and discussion group on HIV/AIDS in Nigeria and the West African region. It is an example of using a publicly available service like YahooGroups. Over 700 members (from at least 50 countries in Africa and elsewhere) currently subscribe to the forum, with about half of its members being Nigerians or based in the country. 28 28

Some telling quotes from members of the forum:

“The HIV/AIDS forum has been my most reliable source of current information from individuals on the continent.” This implies that a nationally-based forum can serve information that goes well beyond national boundaries.

The forum was created in response to an identified need to bring to the forefront of public discussion, issues about Nigeria’s exploding AIDS epidemic as well as the importance of ‘breaking the silence’ surrounding AIDS in communities across the country. It aims to reduce the HIV/AIDS epidemic in Nigeria through dissemination of prevention information; and provision of empowerment opportunities for Nigerian AIDS activists and people living with AIDS. Other objectives of the project are: • •

to secure the involvement of Nigerian civil society in the HIV/AIDS policy making and implementation process place stakeholders (people living with AIDS, AIDS service organisations, public health officials, the media, parents etc) on the driver’s seat of the AIDS prevention and control efforts in the country.

Health - Cooperation

PositveLives (www.positivelives.com) PositiveLives constitutes a different type of communication strategy in confronting the challenges of HIV/AIDS, one that straddles the line between human interest news and art. Using ICT in innovative fashion to present visual documentation, it raises awareness and promotes action with an alternative approach. Through the stories of people living with HIV/AIDS and those close to them, the PositiveLives images inspire action and understanding across the globe and challenge the prejudices surrounding the pandemic. PositiveLives serves as a catalyst for and works in conjunction with, training workshops, outreach activities, health and education programmes and communication activities. It is supported by The Levi Strauss Foundation, with Terrence Higgins Trust and Network Photographers. The elegant web site serves as the base for the PositiveLives initiative. The stories are shown in a variety of ways. These include large scale exhibitions, travelling sets small laminate and poster displays, video, books and publications.

“As a Nigerian working in HIV prevention research in NYC, but interested in AIDS work at home, it was difficult to stay in touch with events there - until I was linked up to this email group. It provides an invaluable resource to me and I'm sure to many others.” An example of the utility of these tools for the Diaspora.

Fundación Huésped

(http://www.huesped.org.ar/) 29

Fundación Huésped30 is an Argentinian organization active since 1989 in the fight against HIV/AIDS, which they view as both a biological and a social disease that requires the existence of an appropriate community environment for PLWHA. They work to (1) provide access to information and education towards a social conscience of solidarity and commitment, (2) induce research and continuous learning by public health professionals, and (3) improve availability of health and social services for those who need it, including protection against prejudice and discrimination. ICT plays a pivotal role for the organization in fostering collaboration. Through their web site, they promote and inform about actions in four areas: • • • •

Direct assistance to PLWHA and those close to them. (visits to hospitals, provision of medication and other basic necessities to poor patients, help with studies, etc.) Psychological assistance Legal assistance Clinical research

These activities are largely carried out thanks to the collaboration from volunteers. They are financed by private donations, theater and cinema functions, musical festivals, artistic and cultural activities, and the sale of Christmas cards, calendars and other items. The web site contains special sections dedicated to (1) people who need assistance, or (2) people who want to offer their time and skills for collaboration. The Foundation uses ICT in various ways to raise funds, via: • • • •

On line donations Online art auctions Publicity from sponsors (eg. by clicking in their icon) Internet connection services, with a percentage of the cost going towards the Foundation.

Health - Training 29

Systran may be used to translate web pages, http://www.systransoft.com/.

Huésped means “guest” in Spanish

SEAMEO31-UNESCO Project on ICT & HIV/AIDS Preventive Education in the Cross-Border Areas of the Upper Mekong Region [SEAMEO 2003] The project seeks to achieve increased awareness of/skills on how to prevent infection among the more vulnerable groups. It targets around 8,000 in-school youth (13-24-yearolds) through interventions in schools in high-risk cross border areas with special risk groups and source communities, through community-based information programs, community learning centers (CLCs), and peer support programmes for ICT training. The project applies ICT It will do so by: •

developing ICT-based learning materials in local languages, including their use in radio.

•

building capacity of teachers, health workers and other stakeholder for HIV/AIDS preventive education.

•

collecting, storing, and repackaging innovative education materials in an information clearinghouse of information and materials support;

•

establishing a geographic information system (GIS) to support epidemiological national and sub-regional tracking; and

•

targeting interventions with/supporting community-based organizations and NGOs, particularly among isolated, vulnerable and interstitial populations..

Health – R&D Health InterNetwork Access to Research Initiative (http://www.healthinternetwork.org/scipub.php?lang=en) The Health InterNetwork Access to Research Initiative (HINARI) is a new initiative to provide free or nearly free access to the major journals in biomedical and related social sciences, to public institutions in developing countries. It started in January 2002, and now provides over 2100 journals from the world's leading biomedical publishers. HINARI first concentrated on the Least Developed Countries, granting free access to the literature for countries with GNP per capita below US$1000. It then expanded the range of countries to include those with GNP per capita between $1000-$3000 – these have to pay small amounts. HINARI benefits bona fide academic, research and government institutions. Eligible institutions whose staff and students may have access to the journals are: (1) schools of medicine, nursing, public health and pharmacy; (2) universities; (3) health and medical research institutes; (4) government offices working in the health sector, and (5) medical libraries. HINARI fills a significant gap in access to medical scientific publications for researchers and medical personnel in developing countries. HINARI is part of the Health InterNetwork (www.healthinternetwork.org), a major initiative introduced by the United Nations' Secretary General Kofi Annan in his April 2000 Millennium Report32. Led by the World Health Organization (WHO), the Health InterNetwork aims to strengthen public health services by providing health workers, 31

SEAMEO is the Southeast Asian Ministers of Education Organization

45 researchers and policy makers access to high-quality, relevant and timely health information, via the Internet. It further aims to improve communication and networking. the Health InterNetwork brings together public and private partners under the principle of ensuring equitable access to health information. The core elements of the project are content, Internet connectivity and capacity building. e-Governance India Image: a Gateway to the Government of India Information on the Web (http://indiaimage.nic.in/) Produced by the National Information Center of India, this website is a good entry point to the vast amounts of government information and services in a continent-sized country like India. It contains a citizen services gateway, sections for citizens’ charters and public grievances, and news and weather information. It also offers cultural and heritage information. New websites and services are featured in a central section. There are facilities to find information like a directory for the Government of India, and a search engine covering all content in the site. The “Districts of India” section links to information and web sites to districts in all the states and territories. And, appropriately enough, one section refers to e-governance projects and progress. e-Education National Portal of the Ministry of Education of Chile (http://www.mineduc.cl/index_portal.htm)

This portal is an excellent example of the extensive range of services that can be offered online to the entire set of educational actors. The Portal is organized by: •

Services: description of the educational system, laws, directories, a digital library and an extranet (which itself offers many tools and services to educators)

•

School community: with information, resources and announcements tailored to (1) students, (2) teachers, (3) parents, and (4) administrators

•

Educational levels: contents, references and resources for (1) pre-school or kindergarden, (2) primary school, (3) secondary school, (4) university, (5) adult learning, and (6) transversal programmes – those relating emotional, attitudinal and value-related dimensions.

•

Educational reform: ongoing initiatives, results monitoring initiatives, and announcements about new programmes.

http://www.un.org/millennium/sg/report/index.html

Systran may be used to translate web pages, http://www.systransoft.com/.

46 Economic activity DaimlerChrysler response to HIV/AIDS in South Africa DaimlerChrysler South Africa (DCSA) has worked closely with trade unions and service providers to develop a multifaceted strategy that will effectively manage the impact of HIV/AIDS on DCSA and reduce further spread of HIV infection among its workforce. The company estimates that by 2006, a full quarter of the South African work force will be HIV+. The strategy includes continuous education and awareness programmes, comprehensive healthcare services and employee benefits - including antiretroviral drugs and the monitoring of antiviral treatment of secondary (opportunistic) infections such as tuberculosis. The local community involvement will be extended to health education campaigns, the improvement of quality of care in health centers, the involvement of traditional healers as peer educators, the training of medical doctors and health workers on standardized treatment and monitoring schemes, legislative compliance, risk assessments, and research and evaluation. In recognition of its commitment to the fight against AIDS in South Africa, DaimlerChrysler was the recipient of the "Award for Business Excellence in the Workplace 2002" from the Global Business Council on HIV/AIDS. With such an outstanding record in the fight against HIV/AIDS, DCSA could be poised to explore additional ways to make an impact in South African communities: (1) setting up telecommute programmes or subcontracting work through HIV/AIDS organizations; (2) supporting community telecenters (it has already set up computer labs in schools) which in turn can help people to benefit from ICT services for access to information, learning new skills, and alternative work opportunities; (3) establishing online volunteering programmes for employees worldwide to collaborate with teachers, doctors, NGOs and other stakeholders in the fight against the pandemic..

UN Secretary General Kofi Annan presents the award to DaimlerChrysler Chairman Juergen E. Schrempp, paying tribute to the group’s dedicated efforts.