Accessing health information in developing countries: globally, the digital infrastructure that now exists has the potential to transform access to knowledge. But even if the technology to deliver information is available, many barriers to equitable access to quality health information remain.

What do you do when you have an unusual pain in your lower right side? You probably ask family members or friends what they know about the symptoms of appendicitis or you Google appendicitis to find out more about it for yourself. The doctor whom you eventually consult uses Medline to learn more about the new minimally invasive surgical technique and will report back on its successful results to the members of his community of practice. The library in the hospital where you am treated provides additional research on the rare side effects you develop from the pain medication, and your nurse is currently doing an e-learning course as part of her professional training.

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Does this sound familiar? This scenario illustrates the way different actors within health systems disseminate, access, and use health information and knowledge in the United States and other countries around the world. But many people, particularly in developing countries, are still cut off from the wealth of information that we in the United States easily retrieve and utilize as a matter of course.

Access to health information is increasingly recognized as a prerequisite for achieving the United Nations' Millennium Development Goals, and the issue has never been so high on the political agenda. The World Health Organization's (WHO's) 2004 report on knowledge for better health argued that "access to relevant, reliable, and up-to-date health and health research information [in] the developing world must be improved and must take into account the needs of diverse groups of constituencies and stakeholders," Admittedly, developing countries are now more connected than ever before, and the digital infrastructure that now exists has the potential to transform access to knowledge. But even if the technology to deliver information is available, many barriers to equitable access to quality health information remain.

Connectivity

According to the International Telecommunication Union (ITU), less than 4 percent of Africans have Internet-access, and broadband penetration in low-income countries is below 1 percent. Even where the Internet exists in developing countries, it is usually extremely expensive. The cost of Internet connectivity in Africa is the highest in the world, US$ 250-300 per month, amounting to a multiple of the average local salary in many cases. Where Internet access is available, it is often slow and unreliable because the capacities of the submarine Internet cables that provide information exchange with Africa are" hundreds of times less than those in other regions of the world. All of these factors make accessing and downloading full-text articles and research materials extremely time-consuming and often impossible. A 2007 World Bank report, which analyzed Internet diffusion across 199 countries over 14 years, concluded that Internet penetration in low-income countries has only very slowly converged with that of the rest of the world.

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On a positive note, African countries have registered the world's highest mobile phone growth, ranging from 50 to 400 percent in the last three years, according to the ITU, and approximately 40 percent of Africans now have access to a mobile network, although there are great disparities between rural and urban areas. The Makerere University School of Medicine in Uganda, for example, tries to provide every medical student with a handheld computer (PDA) so that they can use reference tools and drug databases when treating patients.

In the interim, concepts such as eGranary or Blue Trunk Library provide provisional solutions in areas with limited or no Internet access. The eGranary is a digital library, an external hard drive of sorts that provides an offline collection of approximately 10 million pages from more than 1,200 Web sites and CD-ROMs. The collection also includes books in their entirety, hundreds of full-text journals, and dozens of CD-ROMs, for all of which the team at the University of Iowa obtained the necessary copyright permission. Generally, institutions using the eGranary, such as universities, make the materials available by putting them on their intranet local area networks (LANs). For areas that have neither computers nor a reliable electricity supply, librarians at WHO started the Blue Trunk Library (BTL) project, which provides a collection of about 150 books and manuals fitted into a blue metal trunk.

But the technical provision of information is only one aspect. Even if quality health information is available, the demand for it still needs to be created and supported by adequate training measures. Health workers and patients in developing countries also need it to be accessible in formats and languages that they will readily understand and in a secure manner that protects individual privacy and personal liberty.

Availability of Health Information

In recent years, a number of initiatives have been established by international organizations and public-private partnerships to provide free or low-cost access to international scholarly journal literature for institutions and readers in developing countries. For example, WHO's Health InterNetwork Access to Research Initiative (HINARI) provides free, or low-cost, access to the major journals in biomedical and related social sciences to public institutions in developing countries. Eligibility for HINARI membership is based on gross national product (GNP) per capita. Institutions in countries with GNP per capita below US$ 1,000 are eligible for free access to the literature. Institutions in countries where GNP per capita lies between US$ 1,000 and US$ 3,000 are eligible for access at reduced prices, but Internet costs and connectivity speed still pose major barriers even for eligible institutions.

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These initiatives provide access to research produced mainly in developed countries, often leaving research generated in developing countries missing from the international knowledge base. The number of scholarly journals published in developing countries that are added to Medline, for example, increases very slowly. This can be due to a lack of adherence to peer-review standards or inconsistent publication. But it results in a limited visibility of literature from developing countries in indices that measure research output such as the Science Citation Index, making it harder for researchers from the Global South to participate in the scientific discourse. It also impedes transparency about what has been published in institutions in the neighboring city or across the border, where very similar health problems most likely prevail. While initiatives such as HINARI largely depend on publishers and/or consortia purchasing, the academic community has been considering alternative mechanisms. Those mechanisms promote open access concepts and institutional repositories and will be particularly--but not only--beneficial for those at underfunded institutions, and in developing countries, whose access under the traditional model is especially constrained.

Localization 

Ethnologue, a Web encyclopedia, counts about 7,000 living languages around the world. Regionally, Africa and Asia show the greatest diversity, with about 2,000 different languages each. However, the majority of health information is only available in English, Spanish, French, and Portuguese, which, in many cases, are languages other than the native tongues of the doctor and/or the patient. Add medical jargon to the mix and you have, at best, health care workers and patients not taking relevant information into account and, at worst, life-threatening misunderstandings. But challenges concerning the access to health information go beyond language barriers. Cultural values, including perceptions of gender roles and traditional medical practices and knowledge, affect the reception of health information and ultimately its application.

Contextualized health information will also need to consider different types of diseases, and the availability of diagnostic tools and medications, among many other parameters. Under the Hesperian Foundation's open copyright policy, their publications, such as "Where There is No Doctor," have been adapted and translated into more than 80 different languages. But the necessary contextualization of health information intermediaries will be required at many different stages and will therefore come in many different forms, from translation tools and medical librarians to online communities of practice and specialized on-site health workers.

Today, that pain you had in your lower right abdomen would probably play out much differently if you lived in a developing country. Even if access to online health information were available, truly, the appendicitis diagnosis would probably be less relevant. Perforations caused by typhoid fever, an infectious disease that while rare in the United States is common in developing countries, often lead to the same symptoms as appendicitis. So, if doctors or patients in developing countries search for those symptoms, typhoid fever should be one of the first suggested diagnoses and treatment recommendations should reflect local realities.

The Bellagio Declaration

The list of barriers, solutions, and projects is hardly exhaustive. To learn more about the obstacles and opportunities in the emerging field of eHealth, the Rockefeller Foundation hosted "Making the eHealth Connection" (www.ehealth-connection.org), a month-long conference series, at its Bellagio Center in Italy in July 2008. The overall goal in convening participants from critical international stakeholder groups was to catalyze the formation of new collaborations to develop strategies to address the challenges of implementing a global eHealth agenda.

One of the eight week-long tracks was dedicated to issues related to the access and use of health information and knowledge. One outcome was the drafting of the declaration on Access to Quality Health Information and Knowledge Sharing (see page 18). The next step will be to develop a concrete work plan that addresses barriers and explores solutions that are user- and demand-driven, openly accessible, and interoperable.

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RELATED ARTICLE: JULY 2008

BELLAGIO DECLARATION ON ACCESS TO QUALITY HEALTH INFORMATION AND KNOWLEDGE SHARING

Recognizing that:

1 Health information and knowledge are social determinants of health since inequities in access to information and knowledge generate and/or increase health inequities, meaning unjust, unnecessary and avoidable differences in health conditions of individuals and population groups.

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2 Health information policies should be part of health policy in order to strengthen the use of information, knowledge, and evidence in decision making.

3 Health comprises health promotion, disease prevention and care to improve health conditions and equity, involving different stakeholders with different interests and needs. This requires a plurality of solutions in meaningful contexts.

4 National and global research programs are essential to identify information needs, to recognize barriers to access, translation and use of information and to evaluate the impact of information and knowledge sharing interventions on health outcomes.

5 The implementation of global eHealth initiatives should be based on partnerships involving various national and international players.

6 Health must be used to overcome barriers to access and use of quality health information and to enable the convergence of initiatives, products and solutions.

7 Priority should be given to settings with weak production of and access to information and knowledge.

8. The information and knowledge sources and tools developed and adapted by eHealth should be openly accessible and interoperable via adequate methods and technologies.

9. Information and knowledge sharing should be implemented through community participation, appropriate technology and integration of promotion, prevention, and care as a primary health care approach.

10. Human resource capabilities should be expanded to incorporate the necessary skills for health information and knowledge management and sharing to meet the needs of different users, applying appropriate standards, methods and technologies.

Recognizing all the above, we commit ourselves to mobilize efforts and resources toward the creation of an environment as a global public good to enable producers, intermediaries and users to develop and share content, methods and technologies. This new environment will increase the use of health information and promote knowledge sharing with a focus on international cooperation for the development of health information infrastructure and human resources.

We call for the creation of a task force with representatives from key stakeholders and donors to establish a plan of action for the implementation of this health information and knowledge-sharing enabling environment as a global public good. Finally, we urge national and international organizations, funding agencies, the private sector, governments and institutions to become our partners in this endeavor.

CLAUDIA JUECH joined the Rockefeller Foundation in July 2007. As a managing director, she provides leadership and direction for the development and application of research concepts and tools for the Foundation. Previously, she managed Deutsche Bank Research's InfoCenter, where she aggregated business, trend and competitive information and distributed it to the bank's European staff. She has a degree in Information Science from the University of Applied Sciences Cologne and an International MBA degree from the University of Cologne.