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Open Access and the Public Domain in Digital Data and Information for Science: Proceedings of an International Symposium 12 The Ptolemy Project: Delivering Electronic Health Information in East Africa Massey Beveridge University of Toronto, Canada There is considerable discussion about the importance of access to electronic health information in poor countries, but to date there have been few projects that deliver the information directly to the doctors who need it and that evaluate how useful they find it. The Ptolemy Project1 provides free access to the University of Toronto Library’s extensive full-text electronic resources to 100 surgeons in developing countries, mostly in East Africa, and uses periodic surveys to assess their satisfaction with the information they receive. None of us knows how the dissemination of electronic health information will take place in the developing world in ten years time, but a safe guess is that there will be a number of different models, with each adapted to a particular niche, and until we experiment with different models we will not learn what works best where. BioMed Central, the International Network for the Availability of Scientific Publications (INASP), Scielo, the Health InterNetwork Access to Research Initiative (HINARI), Ptolemy, and Bioline (to name only a few) all represent different but complementary approaches to delivering electronic health information from local, regional, and international sources to the clinicians, teachers, researchers, and policy makers who need it. Six features distinguish Ptolemy. It is university-library based, not publisher based. It connects the medical literature directly to the end users, when and where they need it. It makes scientific journals from the South available electronically, through its linkage with Bioline. It has an ongoing, built-in evaluation mechanism. It engages African surgeons in an online research community and encourages North-South research partnerships. It could easily and economically be replicated by university libraries anywhere. BUILDING RESEARCH COMMUNITIES The health problems of Africa will be solved in Africa by Africans, for it is they who know the right questions to ask to get practical answers and find solutions that work. Yet how are they to do meaningful research if they 1 Information on the Ptolemy Project is linked to the University of Toronto’s Office of International Surgery Web site at http://www.utoronto.ca/ois/.
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Open Access and the Public Domain in Digital Data and Information for Science: Proceedings of an International Symposium cannot read what has previously been written on their topic? Ptolemy directly addresses the 10/90 gap in health research by providing access to the literature for a group of surgeons in East Africa that has considerable leverage despite its small size. The membership of the Association of Surgeons of East Africa comprises 400 surgeons who are responsible for 200 million people in the eight East African countries; of those 400, 100 are Ptolemy participants. Why is surgery so important in poor countries? The World Health Organization devised the Disability Adjusted Life Year to describe the global burden of disease. In this index, injury accounts for 12 percent of the global burden of disease, more than HIV, or diarrhea, malaria, and TB combined.2 There is a global injury pandemic and in 2001 injury killed just over 5 million people around the world yet world attention remains focused mostly on other health issues. Those who are killed or disabled by injuries would usually benefit from surgical management, and poor outcomes can be related to the lack of surgical care. Ptolemy is a very direct and simple way to improve clinical practice, teaching, and research capacity in Africa and hence the ability to reduce the burden of injury there. When considering how to build research capacity in Africa, one must remember that doctors are not paid to do research. Doctors are paid to take care of patients, operate, run clinics, and do clinical work. Why do doctors conduct research? In Western countries there exists a system of intangible rewards whereby research work is rewarded with the respect of colleagues and status in their communities. While this system of intangible rewards exists in industrialized countries, it is not present in much of Africa. In order to build research capacity we must build a community of medical curiosity that engages doctors mentally and draws them into the endeavor of doing research. How do we engage African doctors in such a community of medical curiosity? To change behavior we have to get the right information to the right persons at the right time and create the system of rewards that will persuade them to stay up at night working on a research project rather than spending that time in other activities. We have to see that their work gets published and that what has been published is indexed and widely available: only then can we expect to see competition-based research funding begin to flow to African researchers. ORIGINS OF THE PTOLEMY PROJECT The origins of the Ptolemy Project are at the intersection of a surgeon’s interests and a librarian’s. The surgeon had returned from working abroad and recognized the boon that access to the medical literature would be for colleagues who had no access to it and the librarian saw the Internet as perfectly suited to serve as the medium for this transfer of knowledge. There is a series of arguments about the inequity of access to health care information and the necessity for building equality. Sharing access with African doctors is a good thing to be doing. It is beneficial to the university; it enhances its profile internationally and has spawned an interesting research topic about how people actually use the information. Thus was born the Ptolemy Project, named after Ptolemy Sotor, the general assigned by Alexander the Great to found the city of Alexandria, who built the great library there in the third century B.C. In establishing Ptolemy we also had to consider publishers’ contracts. After examining the wording of the agreements between the big journal publishers and the university library, we found that the university community was defined as “students, staff, faculty, and affiliated researchers.” We therefore decided to establish a mechanism for making researchers in Africa “affiliates” of the Office of International Surgery researchers in order to connect them with our university and facilitate library access. The library has dedicated 100 proxy server accounts for this. The University of Toronto Library has 50,000 existing library accounts, so the number of accounts dedicated to Ptolemy is not large (0.2 percent). Library accounts provide online, full-text access to a total of over 20,000 journals (2,500 medical journals) and several thousand textbooks. In order not to provide access to those who might be able to afford journal subscriptions independently, we restricted participation to those individuals practicing in countries rated lower than 65 on the Human Development 2 World Health Organization. 2002. “Annex Table 3: Burden of disease in DALYs by cause, sex and mortality stratum in WHO regions, estimates for 2001,” in The World Health Report 2002: Reducing Risks to Health, Promoting Healthy Life, World Health Organization Press, France, October 30.
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Open Access and the Public Domain in Digital Data and Information for Science: Proceedings of an International Symposium Index. Participants must be sponsored by University of Toronto faculty. Participants also have to consent to monitoring of their proxy server activity; the project tracks which sites they go to while they are logged on to the site. They have to respect copyright laws the same way any other user of the library does. And because we are surgeons and believe that surgical care for people in poor countries is essential and has been sadly neglected, we give preference to our surgical colleagues. THE PTOLEMY PROJECT The objective of the project is, first and foremost, to provide a group of surgeons in East Africa with access to medical literature and to evaluate the impact this access has on clinical work, teaching, and research. We wanted to strengthen the existing medical community in East Africa and improve the methodology for analyzing how they used the resource. We hope to demonstrate eventually that improved access to information helps build research communities and in the end improves patient outcomes. The health information that is most useful in Africa may not come from the North, where journals have basic science papers and cover topics that may be irrelevant in Africa. What may be of more use for African doctors is to find out what research is being conducted in other developing countries, such as India or Brazil. Bioline International is a collaborative initiative of the University of Toronto Libraries, Canada (management office), the Reference Center on Environmental Information, Brazil (host computer and software development), and Bioline/UK (liaison). It started as a cooperation between Brazil and the United Kingdom to make the electronic publication of journals from the developing world feasible and is now housed at the University of Toronto Library. Bioline is available free through Ptolemy. We are in the process of publishing the East and Central African Journal of Surgery to add to the Bioline list. The Ptolemy Project not only provides access to journals in the University of Toronto Library to the developing world, but it also works to make electronic access to journals from developing countries possible. There is hope for an information exchange that does not flow just from North to South but rather flows South to North and perhaps most importantly of all from South to South. Lives depend on surgeons knowing what they should know right now. The usefulness of the information is time dependent and surgeons are busy people. During the day they operate in the hospital, and most do their research, reading, and writing in the evening, so convenience of access is very important. The Ptolemy Project provides Internet access at home to participating doctors in Africa, most of whom report their home Internet connection is much faster than the Internet access at their institution. A participant survey was conducted in April 2002 at which time Ptolemy had been operating for four months and was receiving almost 9,000 hits on the site every two weeks. Our survey asked whether access to Ptolemy information had changed their practice of surgery, and two-thirds of the participants replied affirmatively. When asked whether Ptolemy had helped their research projects, 75 percent said “yes.” By August 2002, 118 participants had joined and 21 had left mostly due to Internet connection problems. A problem we encountered in East Africa was a difficulty in integrating the local-area-network Internet connection with the university library local area network. This problem has recently been completely resolved following installation of new software at the University of Toronto Library, so access is by password rather than by proxy server. Of the 97 people involved in the study, 78 were in Africa (69 were from countries of the Association of Surgeons of East Africa and 58 were surgeons). It is interesting that 51 of these participants taught surgery and 42 did research. The study had a total response rate of 79 percent. It is interesting that two-thirds of the participants spent more than one hour a week browsing Ptolemy. That is probably more time than most surgeons in Canada spend on reading. The median cost was about US$42 a month, which is very expensive by African standards. The fact that people are actually willing to pay this rate indicates how much they value the resource. Only 31 percent logged on exclusively from their work environment. Typically in African hospitals and libraries there are often only 10 or 20 computers connected to the same land line. Internet access can be painfully slow through these institutions, whereas at home the surgeons generally have fairly high-speed access. Though it may be unreliable and expensive, it is available, and they are prepared to pay for it.
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Open Access and the Public Domain in Digital Data and Information for Science: Proceedings of an International Symposium We also asked whether Ptolemy was relevant to their practice in three areas—clinical research, clinical teaching, and research. Eighty percent of the respondents thought that it was very relevant or relevant. We also asked about the impact of Ptolemy on their practice; once again a very high percentage found it either strongly enhanced or enhanced. Perhaps the effect Ptolemy is having in Africa is best expressed by the participants themselves (see Box 12.1). BOX 12.1 Sample Comments from Ptolemy Participants “Up until I joined the Ptolemy Project I was only using abstracts for my work. This made life difficult and my publication record to date is not good. The last good paper I published was in 2000 when I finished my Ph.D. I certainly regretted going back home to Africa as I thought my academic career was over. I now know that I will be up to date and I will certainly come up with innovative research proposals.” Dr. J. C. (Malawi) “I am writing my dissertation for Masters in Public Health and Ptolemy is assisting me at just the correct time.” Dr M. S. (Tanzania) “I am very much interested in medical education, especially clinical education. The Ptolemy Project helped me to find relevant information about the subject. It should be noted that, due to financial difficulties, we do not subscribe to any medical education journals.” Dr. P. G. (Mozambique) “I do my hernia operations differently just for starters.” Dr. J. B. (India) “Our library is poor in Lusaka, Zambia. No journals or books. Ptolemy opened for me new world of knowledge. Like a child in a toy shop. It is difficult to stop once you start browsing. Unfortunately Internet connection is often very poor and downloading or opening page is difficult. That is the time when I stop. Preparing lecture in Wound Healing I performed almost entirely from Ptolemy.” Dr. G. J. (Zambia) “I have been able to write my proposal on a burns unit using the information I obtained from Ptolemy.” Dr. P. O. (Kenya) “My research on areas of developmental biology has received tremendous boost particularly that one is able to get full articles as opposed to other sources such as PubMed where only abstracts may be available.” Dr. R. M. (Kenya) “I did not have access to most journal articles full text, and if I needed a paper badly, I would have to ask a colleague from Europe or North America to search, print and fax me the article. It would take forever and I could not use this method too often. Now if I want a paper I download it off my computer. The only hitch is a slow and unreliable internet link . . . and I don’t have to go to the library where services are usually slow and crowded.” Dr. O. K. (Uganda) “The internet access in Gondar College of Medical Sciences, where I work is not good. Since the line is very slow, often I had difficulty of logging into your server. But during the limited time that I was able to access the server of the U of T, I was able to retrieve relevant materials which enabled me to draft a paper, which hopefully will be published in the Ethiopian Medical Journal. I am grateful to the Ptolemy Project for this.” Dr. S. B. (Ethiopia) “. . . no digital divide as long as Ptolemy is there. I have been able to access all I need from the library.” Dr. S. K. S. (Tanzania)
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Open Access and the Public Domain in Digital Data and Information for Science: Proceedings of an International Symposium The cost of operating the Ptolemy Project is low because there is no incremental cost to the library of opening such a small number of library accounts. The only real cost is the salary of a part-time research assistant and the associated office expenses. Researchers from the Office of International Surgery in Toronto periodically travel to Africa and provide support for participants as a courtesy. The Ptolemy annual budget presently runs about U.S. $10,000 per annum. Ptolemy delivers the information to the people who need it, when and where they can use it. Ptolemy draws surgeons into a virtual research community and builds communication links where there were none before. Ptolemy has a very low incremental cost, most of which is related to the research component of the project. DISCUSSION As previously mentioned we must experiment with different electronic health information models to learn what works best where. Initiatives such as BioMed Central, INASP, Scielo, HINARI, Ptolemy, and Bioline all represent different but complementary approaches to delivering electronic health information from local, regional, and international sources to the clinicians, teachers, researchers, and policy makers who need it. HINARI is a unique and powerful coalition of high-level organizations (publishers, British Medical Journal [BMJ] Group, World Health Organization) working together to provide essential health information to developing countries, yet it appears underutilized. The BMJ reported in February 2003 that only 100 of the 438 participating institutions were using HINARI on a regular basis.3 If their upcoming evaluation shows problems with that uptake they may wish to look to Ptolemy for ways of building their grassroots connections. HINARI is a pipeline, but it has yet to be connected to the taps. Ptolemy is a garden hose compared to the HINARI pipeline, but it actually reaches the end-users, and evaluates how they use the information it provides. Consider the Shaughnessy equation: “The usefulness of any source of information is equal to its relevance multiplied by its validity, divided by the work required to extract the information.”4 Surgeons seldom have an afternoon to spend digging in the library and depend on after-dinner time to read the literature. There is no reason to believe that colleagues on the front line of health care in Africa are any different. Most use Ptolemy from home, not only because evening is when surgeons do their reading and research but also because they seem to have much faster Internet access from home than from work. It is important to see that Ptolemy is not competition to HINARI, but an alternative means to the same end. Where HINARI’s strengths are at the institutional level, Ptolemy’s are its grassroots connections with a small group of highly influential African surgeons, the way it engages them in the evaluation enterprise, and the way it uses existing university library resources. The purpose of this project is not just to provide information but also to evaluate how it contributes to building the communities of medical curiosity needed in developing countries to solve the health problems that affect billions. The incremental cost of providing access to our research affiliates in developing countries is negligible to both publishers and universities as it utilizes preexisting resources. As any company is concerned about both its corporate image and its bottom line, publishers may want to think about whether in the long run, it will be less expensive and more effective to build a new international library with Geneva-based bureaucracy (HINARI) or to allow existing libraries like the University of Toronto to develop Ptolemy-like projects. It is plausible that the overall costs of the latter approach will be much lower and the benefits more direct. There is no capital cost, no loss in revenue, and the impact of their journals will improve. The diversity of information needs in developing countries argues for a multiplicity of strategies to address them. Ptolemy is producing data that will be very helpful to all involved in the enterprise of bringing electronic health information to doctors in developing countries. 3 R. Smith. 2003. “Closing the digital divide,” British Medical Journal, 238. 4 F. Godlee, R. Smith, and D. Goldman. 1999. “Clinical evidence,” British Medical Journal, 318:1570-1.
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Open Access and the Public Domain in Digital Data and Information for Science: Proceedings of an International Symposium FUTURE DIRECTIONS We regard Ptolemy as an experiment in providing access to the medical literature and evaluating how the information is used. The next stage will involve electronic “hit” analysis to provide a clearer view of which resources are most useful to our African colleagues. Ptolemy functions to fortify a fragile emerging research community of African surgeons and we are now engaging them in a Delphi process to identify priorities for surgical development in East Africa. Our participants are, after all, the experts and so we are building the Ptolemy group into an interactive research community focused on finding African solutions to African problems. Ptolemy provides a readily reproducible model for the dissemination of the medical literature and research community building in developing regions. We are working to insert a clause in all the library’s agreements with publishers acknowledging that a certain proportion of library accounts will be made available to the university’s research affiliates in poor countries. We seek to persuade other universities to build similar partnerships with colleagues in developing countries. It would be particularly helpful to link African HIV researchers in a similar type of project with their counterparts at a major northern university.
Representative terms from entire chapter: