World Library and Information Congress: 71th IFLA General Conference and Council "Libraries - A voyage of discovery" August 14th - 18th 2005, Oslo, Norway Conference Programme: http://www.ifla.org/IV/ifla71/Programme.htm August 22, 2005 Code Number: 186-E Meeting: 142 Health and Biosciences Libraries Save the society from an AIDS epidemic: Indian Public libraries in the current perspective Maitrayee Ghosh S.P. College of Engineering, University of Mumbai, India Abstract: Today Indian society is at high risks. AIDS-the most devastating disease humankind has ever faced become a conflagration on the Indian sub continent and nearly six million people in the country are estimated to be HIV-positive. There is a felt need for providing health information services through public libraries to the illiterate rural population in India, who are increasingly making themselves vulnerable to HIV /AIDS. Today’s challenge is to reinvent the public libraries to respond to community needs and explores the avenues created by ICT enabled networking processes in providing HIV/AIDS information to unprivileged population in India. It concludes with a number of recommendations that are intended to address the core problems and thereby improve the overall situation. Introduction: The recent news about the HIV/AIDS of the nation is distressing. The tremendous growth of HIV positive cases in the last few years made India the second country in the world after South Africa to cross the six million mark. A recent study warned the figure could accelerate further if urgent action is not taken. In fact the epidemic has become the most serious public health problem faced by the country since the independence. India’s socio economic status, traditional social ills, cultural myths on sex and a huge population of marginalized people make it extremely vulnerable to the HIV/AIDS. Indian government launched National AIDS control program in the year 1987 to formulate strategy and plan for implementation of prevention and control of HIV/AIDS. Subsequently, a national AIDS committee was formed and midterm plan for HIV/AIDs was developed in 1989 for five states (W.B, Tamil-Nadu, Maharashtra, Manipur and Delhi) but proved insufficient compared to the huge population of the country. If current prevention efforts can be scaled up and sustained public libraries need to be included in the process to avert a widespread epidemic. Libraries are significant information agents in meeting the demands for HIV-AIDS material. Public library has an important role to play in the provision of health information. People see libraries as familiar and accessible and as a reliable source of information (Lankaster, 2003) There is a felt need for providing health information services through Public libraries to the high risks population specially young adults, who are increasingly making themselves vulnerable to HIV/AIDS. It is logical that Public Libraries should take a lead in developing partnerships and networks with medical libraries to ensure that access to HIV/AIDS information is readily available across the country and share expertise for the benefit of the community specially those are economically backward. Libraries have a moral vindication to provide access to information for children and young adults with special attention to AIDS issues (Charles, 2003) Public library can play a pivotal role in educating families about the disease and in ways of preventing its continued spread. Awareness levels of HIV/AIDS in rural areas is shockingly low, realizing the seriousness of the problem Public libraries situated in rural areas have to serve as powerful agencies for creating awareness and dissemination of relevant information among the unprivileged masses. As a matter of fact there should be paradigm shift in the policies, aims & objectives of the public libraries in India. HIV/Aids information and Public Libraries: A review of related literatures Literatures in the area of HIV/AIDS information and public libraries are relatively new and less in number. A review of literatures of the past five years revealed that only few publications appeared in the professional journals and conference proceedings on role of libraries in disseminating HIV/AIDS information. Interestingly, enhancing access to health care information through convergence technologies has gained much importance and widely discussed in current professional literatures. Paiki Muswazi (2000) made a survey of fourteen public libraries in Swaziland regarding the availability of HIV/AIDS resources and found out that information resources are lacking in appropriateness and limited in number, not updated frequently. Nicholas, D. et al (2002) have an exploratory analysis of the use of NHS touch Screen Health Kiosks located in various public places and libraries in UK and observed a significant consumption of health information by general public. Aslib Proceedings devoted a special double issue on Health informatics in the year 2003 includes a dozen articles, and discuss a wide range of issues on health informatics. In their study of the use of the Internet for health information, Williams et al (2003) found a huge variation in reasons for going to the Net for accessing health care information by varieties of people (i.e. as patient, intermediary professional or for general interest). Jones (2003) provides an overview of his research project on the efficacy of providing patient information via touch-screen information systems. McWhirter (2003) looks at the potential of using television sets at hospital bedsides to provide patients with access to health information. Gunter and et al (2003) explore the effectiveness of digital interactive television (DiTV) in providing health information services and stated that the Department of Health in the UK has made a major investment in testing the potential of DiTV as a health information platform. Lankaster (2003) identified various problems and barriers to effective use of the NeLH in public libraries such as Level of Information, Visual appearance, Search facility, Need for staff assistance and Staff Training etc. Charles (2003 ) discusses about HIV/AIDS in Uganda and recommends library intervention to control the epidemic. He point outs various programs and activities of National Library of Uganda and Kenya national Library Service, delivering integrating HIV/AIDS services and programs to the people. Marie O'Brien (2003) in her conference report on IASL 2003 Annual Meeting elaborated the role of libraries specially school libraries in preventing AIDS epidemic. Ghosh (2005) proposes a model of ICT driven public libraries for India and suggests that public libraries could offer a single integrated environment for dissemination of HIV/AIDS information. Margaret (2004) in her article explored the possibilities of using Fiction collection as a tools to fight HIV/AIDS battle. Library Trends winter 2005 issue is devoted to Consumer health issues. A total of nine articles are included and majority of them are on Consumer health Information Ruffin et al (2005) discussed the collaborations between public and health sciences libraries for example Consumer Health information network (CHIN) project at Massachusetts. He and his associates further described where health Sciences libraries also have collaborated successfully with community- based organizations in addition to public libraries to promote access to health information. Press & Digs- Hobson (2005) opined that “librarians can play an important role in the provision of health information if they listen carefully to community needs, develop cultural competence, and work with community partners” A poster session hoisted by author during 26th IATUL –2005 annual conference at Quebec city, Canada entitled “AIDS Challenge: Preventive health care information and women in India” included health related projects and initiatives by government of India to disseminate health care information to rural masses with special reference to women in India. Emerging role of Public Libraries: Public libraries are often talked about as the possible solution to information poverty as they are in a position to provide free access to the Internet for local community. Indian public libraries are owned and financed by their owners, namely the Central and state governments. The Indian Public Library Act decrees that libraries are for everybody and that the service to the public shall be free of charge. Because Public libraries are accessible, open to the public and generally safe, can be uniquely comfortable places for local community to spend time without having to audition, apply, sign up or pay a fee. Public libraries procuring information resources on AIDS need to train the library users and the general public on maximizing access to HIV/AIDS information. Prevention should be a key area of focus and prime concern that can be brought about by awareness. Public libraries should set up pre and post HIV test counseling. The importance of counseling is brought home by the fact that who have been counseled took precautions to protect their partner/child from getting infected. ICT –driven public libraries are the need of the hour and should act as an intermediary center with suitable awareness program for improving literacy, awareness, welfare and cultural awakening (Ghosh,2005) . Public libraries ought to use new technologies to develop online world to transform the lives of unprivileged rural masses in India Following are the few collaborative initiatives to enhance access to HIV/AIDS information: • New York Online Access to Health (NAOH) is a collaboration of a number of New York libraries, including the New York Public Library, provides full-text HIV/AIDS related information for consumers • Consumer Health information network (CHIN) project at Massachusetts- a collaboration of a hospital and six public libraries in the surrounding community. National Library of Medicine, the University of Illinois at Chicago’s library of the health Sciences collaborated with a variety of community-based organizations to extend access to HIV/AIDS information. • Philadelphia's AIDS Information Network have staff training program and cooperating with local AIDS service agencies, also acting as referral points and play an important role in the fight against AIDS. • Visual AIDS is a project working very closely with New York public libraries http://www.thebody.com/visualaids/about.html increasing public awareness of AIDS through visual arts. It raises money to provide direct services to artists living with AIDS. • Detroit Community AIDS Library (DCAL) is a partnership of Academic health sciences, medical hospital and public libraries. The goal is to provide a gateway to local and worldwide HIV/AIDS information resources for Detroit and Southeastern Michigan. Funding for this project coming from the National Library of Medicine and have been utilized to strengthen participating library collections on HIV/AIDS and educating librarians to better meet the HIV/AIDS information needs of the community, and to provide a computer-based networked resource on HIV/AIDS. • Kenya National Library Service (KNLS) introduced HIV/AIDS awareness program in response to the Government’s appeal for multi-sectoral approach to combat HIV/AIDS. The Kenya National Library Service is associated with an AIDS awareness project that repackages and translates information from foreign sources (Sturges, 2001, 47). Public libraries should undertake the following activities: 1. Dissemination of information on HIV/AIDS through folk media such as drama, songs and dances. Conducting video shows every day just like other library services, which will facilitate easy access to information on HIV/AIDS. Less explicit videos about HIV should be made available at public libraries to be checked out for no charge. 2. Organizing seminars, exhibitions and other related forum such as World AIDS Day celebrations- Distribution of publications on HIV/AIDS freely among public during exhibitions and weekly lectures. A conversation with the community on impact of HIV/AIDS; conducting get together among peer groups to discuss various issues related to the disease. 3. Creating alternative ways of delivering curriculum to students who might not be able to attend school directly because they or a family member has the disease, or because they have been orphaned as a result of parents dying of AIDS 4. Translation of documents on HIV/AIDS from English to regional languages in order to reach a wider audience. 5. Encouraging personal testimonies by those infected with HIV/AIDS and organizing with the local NGOs for free voluntary HIV testing. 6. Delivering information and referral services which can refer to local HIV-related services. Possible Role of Information professionals: The Information professionals in India have to play a decisive role through the process of educating their society in any given time and space. They are generally the people who have the responsibility of collecting and organizing the resources in commensurate with the needs of local community. It is best if they, themselves are knowledgeable about the HIV/AIDS, committed to educating people about the disease, and have an understanding of different cultural values and can constantly reacquaint themselves with current developments in the treatment of HIV/AIDS and of governmental policies dealing with it. As a consequence of becoming HIV/AIDS educators, librarians must, by default, engage in a form of social marketing. The principals of social marketing are based on commercial marketing practices that aim to change social attitudes towards AIDS in a positive way. The main activity of this marketing though is promotion of information from organizations and individuals, rather than promotion of any product. Health information needs are multifarious, and that some individuals do not see information as the panacea to their problems. This is a useful wake-up call for the information specialists. (Peter Williams and Paul Huntington (2003) Information professionals should take keen interest in the acquisition of special collections that will help to get the message across to those people, and to keep them informed of new developments in the prevention and treatment of HIV/AIDS. It is the responsibility of the professionals serving in public libraries to have deeper insight into the day-to-day demand of the community and the society at large Librarians need to expand their roles as educators to that of health educators as well and target local groups within the community who might require the attention of information specialists. In order to combat the disease, Professionals serving in various libraries need: • To empower adolescents to protect themselves from HIV infection • To Create documentation of the AIDS epidemic using convergence technologies • To make information relevant, realistic and acceptable • Reduce the stigma of HIV/AIDS increases infection • Form partnerships with marginalized community groups, such as Aids orphans, widows and the aged. In line with its community education policies, public libraries need to help community libraries to obtain increased funding for HIV/AIDS education, to design extension program, developing E-resources. Librarians can play an important role in the provision of health information if they listen carefully to community needs, develop cultural competence, and work with community partners (Press & Digs- Hobson 2005) Library services for HIV/AIDS education range from very basic to full-fledged support and information services. The most basic service may be offered is the provision to clients of community group and organization contact details. More sophisticated services offer: wider contacts with outside agencies, provision of referrals to these agencies, a wide collection of specific types of information, e.g. diet and lifestyle, and established links to non-mainstream sources of information. It is understood that Libraries with vigorous HIV/Aids information programs can and do make a difference to the people and communities who use those services. Use of convergence Technologies to spread HIV/AIDS information Convergence technologies are a diverse set of technological tools and resources to create, disseminate, store, bring value addition and manage information; it does not include only the Internet but a gamut of other tools which could be used individually or in convergence with each other. Information and Communication Technologies in convergence with other forms of communication have the potential to reach those who hitherto have not been reached by any other media. Although Information & Communication Technologies (ICT) was introduced in rural development in the year 1986, rural Public libraries largely remained as a forgotten asset in the dissemination of Information to the rural population. Secondly the IT policy formulated in the year 2000 shown little interest in the development of rural libraries. The scenario need to change, we the information professionals need to come forward and study the present system of operation and find a better solution to transform these reading rooms in to an information/knowledge centre where people, crippled with illiteracy or limited education, find value. Use of convergence Technologies reduces the skew in knowledge distribution between rich and poor, educated and uneducated, rural and urban and men and women. Contrary to the general belief, Information Communication Technologies not only equal the Internet but also include other technologies: • Television, radio, CD player, computer and Internet in one unit. • Internet services delivered to TV sets via systems like Web TV as well as delivery via digital satellites and cable modems. • Web casting of radio and TV programming on the Internet • E-mail and World Wide Web access via digital TV decoders and mobile telephones • Palm PCs with Internet • DHT TV channels and radio • Internet for voice telephony • Videophones Peter Williams and Paul Huntington (2003) in their guest editorial mentioned “health informatics, especially consumer health informatics, has pioneered the digital way…. For many people the Internet, digital interactive television, the touch-screen kiosk and mobile phone have resulted in the overnight transformation of an information-poor world into an information-rich one” “Info-Thela” project of Indian Institute of Technology, Kanpur: A project called "Info-thela," or “info-cart” aims to use wireless technology to disseminate health information and improve health care in India's villages, where most of the country's 1.06 billion people live. It aims to improve public health by facilitating the flow of health information, using the Internet. The core elements of the project are content, Internet connectivity and capacity building. The Info-thela cart has a specially designed frame and cushioning to protect the computer and accessories from the bumpy ride. The mobile platform is necessary to reduce cost of ownership because the resources are shared by a larger population. It is also necessary to push information to women and elderly people who can't travel outside their village. Plate :1 Info-Thela The mobility of a cycle rickshaw, which is light enough to cross muddy, potholed roads, ensures that Internet can be used by people lives in remote villages. E- learning through Public Libraries E- learning is a cost effective way of spreading information across geographically dispersed libraries. E-learning module on AIDS awareness may be installed in Public libraries aimed at educating and increasing responsiveness within the community Information Kiosks need to be installed in the public libraries enabling people to learning modules at their own pace, they can log in anonymously, facilitate a non threatening and non discriminatory environment. Alternatively, module can be accessed directly from a libraries existing infrastructure. The content of the module will be comprehensive and may be designed in three sections: Figure 1: E-learning module: The National Electronic Library for health (NeLH) in UK opens up a one stop gateway to quality assured and up to date health information on the Internet. During a pilot project electronic health information services were set up in public libraries. Although a variety of problems and barriers to effective use of the NeLH in public libraries were identified (e.g. levels of information provided, visual appearance, search facilities, the need for staff assistance and staff training etc.), the initiative remains a valuable example of what can be achieved. Another relevant UK National Health Service (NHS) initiative would include the use of “Touch screen” information kiosks located in health centers and libraries (Nicholas et al. 2002) The recommendations that have come out of these pilot projects may be used by public libraries in India, who should try to implement similar initiatives of their own for the benefit of the huge population of marginalized people, who are extremely vulnerable to HIV/AIDS. Suggestions and Recommendations: • National symposiums on HIV/AIDS need to be conducted with health center/ community center, public libraries and NGOs. There is an urgent need for Government initiatives to General Information: Differences between HIV and AIDS etc. Living with HIV/AIDS- why it is important to be tested, testing process and where to get tested… How to survive with HIV/AIDS-understand the complexities of the HIV virus and how to live a healthier life with it establish a relationship between the researchers, policy makers and the general public in the fight against HIV/AIDS. • Public libraries should set up mobile units, which should carry reading material related to HIV/AIDS and distribute publicity materials through mobile unit of the libraries. This also will fulfill one of the objectives of Raja Ram Mohan Roy Library Foundation, Kolkata. • Resource development and establishing HIV/AIDS information centre in public libraries- Illiteracy or lack of information compounds the impact of the disease for HIV positive men or women. Govt. of India should fund in resource Development and support libraries to meet the needs of their clients or communities by developing specific educational or informational materials such as culturally or language specific information resources. Online directories should be created by Public libraries for locating AIDS information and testing centre, referral and support center etc. • India should develop a National Electronic library for AIDS [NeLA] in the pattern with the communicable disease Specialist Library within NeLH (National Electronic library for health, UK). • Public Libraries based in rural areas should be provided with complete multimedia gadgets-libraries should explore the excellent medium like Digital T.V, Information Kiosks, which could be fruitful in disseminating information on HIV/AIDS program being carried out by the government. • Multi-type Consortia-public libraries in India is lacking partnership in the community and the need to move away from traditional service models and enhance ties with other like minded organizations. Public Libraries wishing to serve their communities in the provision of AIDS-related information and resources should form multi-type library consortia and take the lead to manage the project, also include other types of agencies, such as health sciences libraries (for expertise and resources), Community-based organizations (CBO) or patient advocacy groups(offer AIDS-related services to the affected community) etc. This encompasses both individual groups wishing to enhance their own services, as well as several like-minded organizations cooperating for the purpose of HIV/AIDS education. Forging partnerships with local organizations and NGOs will be helpful in deepening library programs and services for HIV/AIDS • Prevention based AIDS Program- Aimed at the younger generation and thereby increasing awareness of responsibility of the youth towards themselves and to society. Prevention is the best medicine and knowledge is the ultimate weapon that can help to combat this stigmatized issue. Public Libraries particularly be interested in involving the affected community in the development of new programs. • HIV/AIDS help-line: A 24-hour telephonic help line to be installed in the public libraries to provide immediate, reliable and factual information on HIV/AIDS for the layperson. Professional and experienced counselors need to work at clearing peoples’ doubts and misconceptions and providing counseling and guidance in an environment of anonymity and confidentiality. • Skills Development: Training to develop skills in accessing or using HIV/AIDS-related information including using online databases and general AIDS information resources in order to improve services and benefits to the community. This may include training for the staff working in libraries, development of training programs for local community and other agencies, etc. Concluding Remarks: Prime Minister of India on August 15th 2001,the occasion of India’s Independence day under the health for all scheme, emphasized on mass campaign against AIDS. Despite the growing crisis Indian national government and individual state government is making poor use of Public libraries for prevention, which can play a major role by providing timely information on control, prevention and care. HIV/AIDS forces us to reevaluate the basic functions of public libraries, particularly in areas where migrant populations are more. Public libraries need to act as a centre to bring HIV positive population together and share their fears and grief and tell stories about how they get infected etc. because HIV positive population always remain isolated, secretive and fearful. In a society which doesn’t produce or reflect accurate images people living with AIDS, libraries should offer them the reassuring opportunity to meet other HIV-positive people to hear their stories and realize that they are not victims but survivors. Many HIV positive people are not well informed about managing the various aspects of AIDS and unpredictable illness; often not provided with useful or accurate information by their physicians. Librarians/ Information officers need to take a leading role in educating and transforming knowledge of and attitudes towards HIV/AIDS through extensive library programs within many communities. Catherine Campbell in her editorial article (2004) suggested the creation of Partnership or alliances as a strategy for creating ‘health enabling community context’ and stated that partnership approaches have been advocated in the light of the insight that the problem of HIV is too complex and too multi-faceted for anyone stakeholder constituency to deal with. 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Charles Batambuze (2003) “The role of libraries in providing access to information for children and young adults with special attention to AIDS issues” 69th IFLA general conference and council, 1-9th August 2003,Berlin http://www.ifla.org/IV/ifla69/papers/041e-Batambuze.pdf 9. Ray Jones (2003) “Making health information accessible to patients”, Aslib proceedings,vol.55, no.5/6, pp. 334 - 338 10.Marie O'Brien (2003) “School Libraries - Breaking Down Barriers: International Association of School Librarians (IASL) 2003 Annual Meeting” Library Hi Tech News incorporating Online and CD Notes, vol. 20,no.9, pp 11.Barrie Gunter; David Nicholas; Paul Huntington; Peter Williams (2003) Digital interactive television: health information platform of the future? 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