The chain of communication in health science: from researcher to health worker through open access

Chan, Leslie; Arunachalam, Subbiah; Kirsop, Barbara

Gavin Yamey provides a number of instances in his article "Excluding the poor from accessing biomedical literature: A rights violation that impedes global health." 12 In one instance, a physician in southern Africa whose primary access to information was to ab stracts posted on the Internet altered a perinatal HIV prevention program based on his reading of a single ab stract. As Yamey reports, had the physician had access to the fulltext article, he would undoubtedly have real ized that the study results were based on shortterm fol lowup, a small pivotal group and incomplete data, and were unlikely to be applicable to the physician's situ ation. The decision to alter treatment based solely on the abstract's conclusions may have resulted in in creased perinatal HIV transmission -but there were no funds to purchase the fulltext document. Similar financial limitations on accessing relevant research res ulted in a professor at Makerere University, Uganda, being unable to respond to a request to investigate re search on the "nodding disease," a mysterious illness af fecting children in southern Sudan. Another reference to the broken link in the informa tion chain came from Olayinka Ayankogbe, a senior lec turer in Family Medicine at the Department of Community Health and Primary Care, College of Medi cine, University of Lagos, Nigeria, who stated in a mes sage to the HIFA2015 forum, * "Advances in treatment of major endemic diseases made in the North are 'alien' to most doctors in practice even here in Lagos. Take the example of HIV/AIDS. Information on the most recent and advanced therapies are at best confined to the few professors specialized in HIV/AIDS treatment in the universities. Most GPs do not know. The information gap is horrendous (if that word is strong enough) to say the least." 13 An instance of the importance of open access to both publications and data came to light at the conference Berlin 5 Open Access: From Practice to Impact: Con sequences of Knowledge Dissemination, held in Padua, Italy, in September 2007. Ilaria Capua reported on her work with avian influenza and her laboratory's develop ment of valuable sequence data to aid its containment, but she disturbed the audience by reporting that she was initially discouraged from putting the data into the free, open access database GenBank. 14 Capua's belief in the importance of data sharing resulted in a global pro ject to share information on bird flu: GISAID, the Glob al Initiative on Sharing Avian Influenza Data. 15 At no time was the need to share scientific informa tion openly more apparent than during the 2003 SARS outbreak. At the height of the epidemic, there was un precedented openness and willingness to share critical scientific information immediately. As a result of collab oration of 13 major laboratories in 10 countries, the coronavirus responsible for the outbreak was quickly identified and its genome mapped within weeks. 16 In a WHO news release, Dr. Klaus Stöhr, who coordinated the collaborative research network, remarked, "In this globalized world, such collaboration is the only way for ward in tackling emerging diseases." 17