Towards equity in global health knowledge

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From the International Network for the Availability of Scientific Publications, Oxford, UK. Introduction. Although global spending on health research currently exceeds US$ ..... Global. Forum for Health Research, c/o World Health Organization. 2.
Q J Med 2002; 95:469–473

Commentary

QJM Towards equity in global health knowledge N. PAKENHAM-WALSH and C. PRIESTLEY From the International Network for the Availability of Scientific Publications, Oxford, UK

Introduction Although global spending on health research currently exceeds US$ 60 billion, less than 10% of it addresses the diseases and conditions that account for 90% of the global disease burden.1 Many biomedical researchers in developing countries are also professionally isolated by difficulties in accessing, generating, synthesizing and disseminating information. We emphasize the interdependence of global health knowledge, and draw attention to inequities in the global flow of information that profoundly affect the evolution of the global knowledge base and its relevance to health priorities. Information and communication technologies have great potential to reduce these inequities, not only by disseminating information, but also by supporting such important activities as international co-operation and Southern-led development. We describe briefly some of the challenges, recent achievements, and priorities for the future.

Global health knowledge and the flow of information Health depends on our understanding of its determinants, and the application of this knowledge in the prevention and treatment of disease. This understanding in turn depends on the dissemination and organization of research findings in ways that build on, and make sense of, existing information. Identification, planning, implementation and interpretation of individual research studies all depend

on ready access to all the relevant existing research knowledge. The application of this knowledge to improve our health similarly depends on access to relevant, reliable knowledge in forms that are appropriate, readily assimilated, and easily applied, whether by a biomedical researcher, a nurse, a doctor, a midwifery student, a mother, or an individual. Providing access to reliable health information for health workers in developing countries is potentially the single most cost-effective and achievable strategy for sustainable improvement in health care in these countries.2 There are major inequities between developed and developing countries in access to health information, and its production and dissemination. This applies not only to original (primary) research, but also to review articles, and to adaptations of knowledge into forms that are applicable to particular end-users (e.g. learning materials for students, practical manuals for healthcare workers, formularies for prescribers, health education aids for community health workers). It is ironic, for example, that physicians in the UK and US have access to free resources such as the British National Formulary and Clinical Evidence, while many physicians in developing countries have to make do with materials that are either biased (e.g. promotional drug literature) or irrelevant/obsolete (e.g. donated copies of old American journals). Most academic and research institutions in developed countries boast vast libraries, broadband internet access, and access to thousands of international journals, both printed and electronic.

Address correspondence to Ms C. Priestley, Director, INASP, 27 Park End Street, Oxford OX1 1HU. e-mail: [email protected] ß Association of Physicians 2002

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Libraries in developing countries have found it increasingly difficult to provide even the basic minimum of information for their readers. Acquisition budgets have been cut drastically, often to zero, making many libraries dependent on charitable donations provided by agencies such as Book Aid International (UK). Biomedical researchers in these countries are further disadvantaged by language (most biomedical research output is in English) and by lack of visibility of published research: most national or local medical journals are excluded from standard international indexes and databases. Whether such exclusion reflects any bias against developingcountry journals per se is controversial, but the quality of many such journals is bound to be affected by the quality of author input, financial income, editorial resources and many other factors, all of which mitigate against journals published in developing countries, and which lead to the well-known syndrome of ‘Volume 1, Number 1 and no further issues’. Many local journals are not indexed simply because they are unable to publish on a regular basis. The latter also means that users lack confidence and will not subscribe to the journals. The costs of professional isolation are well recognized, and include difficulty keeping abreast of current research, difficulty competing with and engaging in cutting-edge research opportunities, migration of many of the ablest scientists to developed countries (and, in turn, to research led by developed-country priorities), and further erosion of the national research infrastructure. In turn, lack of access to information has an immeasurable impact on the research community’s capacity to identify priorities, i.e. gaps in the global knowledge base which, if addressed, would help with local (if not regional and global) health needs.

Addressing the problem Launched in 1992, INASP (the International Network for the Availability of Scientific Publications) is committed to enhance the flow of information within and between countries, especially those with less developed systems of publication and dissemination. INASP is a co-operative network of partners working to improve access to information worldwide. It is a non-governmental organization under the aegis of the International Council for Science (ICSU), the leading global body for international scientific co-operation. Its activities range from providing advisory and referral services, to facilitating specific programmes for Health, and Rural Development, as well as a portfolio for

university and research libraries and book and journal publishers. More recently, it has also embraced the opportunities that information and communication technologies can offer: an unprecedented ability to bring scientists and health professionals closer together worldwide, and to strengthen and support those aspects of biomedical research that are most relevant to global health. The challenges include: access to biomedical research knowledge; access to learning and reference materials; support for creation and dissemination of local research and experience; and support for the local repackaging of knowledge into forms that are appropriate to non-specialist end-users (e.g. primary healthcare providers, general public). We will look at each of these areas in turn.

Access to biomedical research knowledge While library budgets in developing countries have been cut, the price of journal subscriptions—both printed and electronic—has increased steeply. Most subscriptions have become unaffordable to developing country libraries, and many such libraries have ceased to become subscribers, if indeed they ever were. The emergence of thousands of online journals has created an unprecedented opportunity to enhance access to information for researchers in developing countries. Initially, this seemed only a remote possibility,3 but the tide has now turned. The marginal costs of providing electronic access to subscribers in developing countries are minimal, and the advantages of providing free or verylow-cost access to electronic journals are now recognized by development agencies, international publishers, librarians, and the scientific community to outweigh any perceived disadvantages and limitations. INASP’s Programme for the Enhancement of Research Information (PERI) and WHO’s Health InterNetwork Access to Research Initiative (HINARI) are two initiatives responding to the expressed needs in developing and transitional countries (Box 1). These are complemented by supply from a number of individual publishers and services, e.g. BMJ Journals, The Free Medical Journals Site, HighWire Press, etc. What’s in it for publishers? For a long time, many learned and professional society publishers have had a genuine desire that their publications reach colleagues in resource-poor countries. Programmes such as PERI offer a reliable and administratively easy way to reach health professionals throughout the developing and transitional world. Other publishers are possibly using the initiatives to generate public relations capital. A free journal is a free

Global health knowledge Box 1

Programme for the Enhancement of Research Information (PERI) A four-component programme of support to information production, access and dissemination for research partners in developing and transitional countries using new information and communication technologies. Key objectives are to: (1) Facilitate the acquisition of international information and knowledge through electronic Information and Communication Technologies (2) Strengthen and develop access to journals in developing countries as a medium for the dissemination of results from national and regional research (3) Provide awareness or training in the use, evaluation and management of electronic information and communication technologies (4) Enhance skills in the preparation, production and management of journals Component 1 now includes access to over 7000 full-text online journals, current awareness databases and services, and document delivery in science, technology, medicine, agriculture, social sciences and humanities. Component 2 supports access to and dissemination of journals from developing regions. Component 3 provides opportunities for ‘Using the Internet’ training, and Component 4 supports training for journal editors and publishers, through workshops, study visits and ‘mentorships’. PERI is open to universities, research institutions and professionals working in a non-profit environment. whttp://www.inasp.info/x

Health InterNetwork Access to Research Initiative (HINARI) HINARI is a new initiative to provide free or nearly-free access to the major journals in biomedical and related social sciences, to health-related institutions in developing countries. Led by WHO, the Health InterNetwork aims to strengthen public health services by providing public health workers, researchers and policy makers access to high-quality, relevant and timely health information, via the Internet. It further aims to improve communication and networking.

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The programme is open to public institutions in two groups of countries. The country lists are based on GNP per capita (World Bank figures, 1998). Institutions in countries with GNP per capita -$1000 are eligible for free access to the literature. Institutions in countries with GNP per capita $1000–$3000 will be eligible for access at reduced prices. It includes over 1000 journals from the world’s six largest publishers. HINARI is part of the Health InterNetwork, which was introduced by UN Secretary-General Kofi Annan at the UN Millennium Summit. whttp://www.healthinternetwork.org/src/ eligibility.phpx

journal, no matter what lies behind it, and these types of activity should certainly receive the credit they deserve. Limitations include the availability and stability of internet access (to address this, some packages available within PERI are also being made available on CD-ROM). Possible disadvantages include information overload, and the uncertainty of whether free access can be continued in the future or will be superseded by the gradual introduction of charges. More important still, there is the potential impact on the dissemination of research findings from developing countries. It is possible that, in the long term, more research from developing countries will become visible internationally, either (1) by existing national and regional journals being supported to go online or (2) by greater dissemination and easy access through the international biomedical research literature, which is already taking the ‘cream’ of much developing-country research. The long-term outcome is likely to be a mix of these, with multiple links between them, so that all ‘local health knowledge’ in effect becomes linked with, and part of, ‘global health knowledge’.

Support for national and regional biomedical journals Journals in many developing countries have not been able to take advantage of the opportunities offered by the Internet, because of weak technological infrastructures and costs. Many have ceased publication altogether, particularly in Africa. Their research has suffered, because the means to publish research results are lacking and the results on which to develop further research are not disseminated. African Journals OnLine (AJOL) whttp:// www.inasp.info/ajol/x is a programme that has been working since 1998 to assist in this area. Its

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objectives are: to provide access to research undertaken and published in Africa; to enable the results of research carried out in Africa to become more widely known and to increase knowledge about African scholarship; to strengthen the African academic publishing sector, by providing income through encouraging print or electronic subscriptions and through the purchase of single articles; to assess the impact of using the internet to promote Africa-published journals; and to hand over a sustainable and operating programme to an African host in 2003. Free access is offered to Tables of Content and abstracts, together with links to electronic full text where available. Subject coverage includes: Health, 16 titles; Science and technology, 21 titles; Social Sciences, 31 titles; and Agricultural Sciences, 9 titles. New features added during 2001 included: journals from South Africa and Francophone Africa; links to over 30 journals about Africa but published elsewhere; pages in French as well as in English; instructions to authors; purchase of full text articles by credit card; document delivery offered by fax or post. More than 2500 people have registered to use the service, and page hits have risen from 6000 in January 2001, to 44 000 in March 2002. AJOL acts as a showcase for journals published in Africa, and has established itself as an essential source for all those who need access to research and information on Africa. INASP has also received, and will be responding positively to, requests from several other countries and regions to adapt the same methodology for exposure and promotion of their journals.

Access to existing learning and reference materials Health professionals clearly need a variety of formats—printed materials, video, audio, computer-based—for training, practice, and continued professional development. The Internet is, or could be, a mine of information and resources for end-users in developing countries. Internet gateways are a popular and useful method of helping Internet users to identify useful on-line resources. Selected links are organized and described in order to help users find what they need. But there is a surprising lack of health information gateways for developing countries. As the WHO Review of Internet Health Information Quality Initiatives says: ‘Numbers vary and none are very accurate, but it is estimated that there are over 100 000 health-related Web sites on the Internet today . . . There is an urgent requirement to examine the needs of the developing world

and the info-poor in relation to quality of Internet health information, products, and services. This is a reflection on how poorly the current batch of quality initiatives has addressed those needs’.4 The INASP Health Links gateway wwww.inasp. info/links/healthx was launched in January 2002, as an initial contribution, produced with minimal resources and without formal quality assessment of content. In the long term, health professionals in developing countries require comprehensive and quality-controlled gateway services in consultation with end-users. Such vital initiatives can only be achieved through international co-operation.

Support for local adaptation, synthesis and repackaging of knowledge For researchers in developing countries, the value of the internet is already apparent. The needs for front-line healthcare providers are different. Most healthcare providers continue to lack access to the basic information they need to learn, to diagnose, and to save lives. In order to be useful, information materials for healthcare workers need to be both relevant and reliable. Information for healthcare workers must be relevant and accessible to the end user, or it will simply not be used. Local ‘repackagers’ of health information—whether ministries of health, NGOs, training colleges, publishers, or libraries—are best placed to synthesize and adapt information for local healthcare workers. They are best placed to understand not only their information needs, use of language, educational level, and level of medical training, but also the context in which the information will be used: socio-economic factors that affect healthcare interactions, the levels of available resources (e.g. drugs, diagnostic equipment), local healthcare infrastructure and services, cultural factors, and local disease patterns. Most healthcare providers do not have access to the Internet, and even if they do, useful material is difficult to find. A great potential (largely unrealized) of the Internet is its use by repackagers of information in developing countries: the librarians, publishers, non-government organizations, ministries of health, lecturers, trainers and others who are responsible for meeting the information needs of health professionals at national and local level. AfriAfya, Kenya: ‘Despite the plethora of health information on the Internet, very little is directly suitable for dissemination to poor communities as it is. It needs to be repackaged to ensure local suitability and relevance . . . We see ourselves as a Staging Post, accessing and receiving information from local and international sources, adapting

Global health knowledge

it and ensuring it is relevant to practical issues in our setting, and then disseminating it to the community-based health intervention sites that we are working with’. Any piece of ‘new health content’ is in practice a synthesis of ‘content’ from a range of sources (formal and informal publications, own experience, research data, and/or the experience of others, expressed orally, in print, or visually), shaped by the author’s interpretations and beliefs. In other words, generation of new content plus access to source content (whether local or global) are but aspects of the same whole.

The need for international co-operation In general the international response to this global crisis has been fragmented, with much re-invention of the wheel and duplication of effort. Since the early 1990s, however, there has been recognition of the need for international co-operation. Most importantly, such co-operation should have at its heart the participation and ownership of developing countries. Local producers and end-users must be involved from the earliest stages in dialogue, priority-setting, problem-solving, creative thinking, and generation of plans for action. In the past two years, there has been particular progress in the field of ‘access to existing international electronic information’, but there are greater challenges ahead. It is increasingly clear that progress in all of the priority areas has required, and will require, international co-operation among stakeholders, driven by the needs of end-users. In practice, this means it is essential to facilitate and promote open dialogue among all those with an interest in the exchange and use of health information. INASP-Health was launched in 1996 as a specific programme of INASP. INASP-Health is a co-operative network of more than 1000 organizations and individuals worldwide, working to improve access to reliable, relevant information for

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healthcare workers in developing and transitional countries. Its mission is to strengthen and support the activities of organizations world-wide towards the common goal of providing universal access to reliable information for health professionals in resource-poor countries. INASP-Health runs regular thematic workshops in London: the ‘Health Information Forum’ with guest speakers from developing countries. It also publishes the INASP-Health Directory, which is the leading directory of organizations working to improve access to information for health professionals in developing countries. QJM readers with an interest in equity in global health knowledge are invited to join ‘HIF-net at WHO’—an e-mail discussion list dedicated to issues of health information access in resourcepoor settings. Launched in July 2000 in collaboration with WHO, the list promotes cross-sectoral communication among providers and users of health information. It currently has over 700 participants: health professionals, librarians, publishers, NGOs, and international agencies worldwide. To join the list, e-mail your name, affiliation and professional interests to [email protected]. For further information on INASP’s activities, including free access to the INASP Newsletter, INASP Links and Resources, INASP Health Links, INASP Directory, INASP-Health Directory, and ‘Health Information Forum’ thematic reports, see whttp:// www.inasp.infox.

References 1. The 10/90 Report on Global Health Research 2000. Global Forum for Health Research, c/o World Health Organization. 2. Pakenham-Walsh N, Priestley C, Smith R. Meeting the information needs of health workers in developing countries. Br Med J 1997; 314:90. 3. Darch C. The unsustainable library: does the internet really help us in Africa? Link-Up 2000; 12:4–11. 4. Review of Internet Health Information Quality Initiatives. WHO Department of Health Information Management and Dissemination, 2001.