tudinal health and demographic evaluation of populations in low- and middle-income coun- tries (4). The capacity of this and similar net- works has been greatly enhanced by advances in satellite technology, Internet access speed, and increased access to handheld data-entry devices. Development of open-source software such as openXdata (5) has transformed surveillance studies by bringing scale, quality, coverage, and, impor- tantly, knowledge and sharing of best practice. These surveillance networks are succeeding as groups become willing to share data and col- laborate and are beginning to make global dis- ease surveillance a reality. Similarly, the East African Community has made an important step forward in establishing the East African Inte- grated Disease Surveillance Network (EAIDSNet), in which countries share data on communicable diseases to improve public health in their region (6). In Asia, the South East Asia Infectious Diseases Clinical Research Network is success- fully sharing data across dozens of sites and several countries and makes many resources for researchers available on the Web (7, 8). There are many other types of networks operating in combination to give a more com- prehensive understanding of specific diseases, and when data are combined a powerful pic- ture emerges. The Malaria Atlas Project (9) works with geographers, statisticians, epidemiologists, biologists, and public health specialists in en- demic countries to assemble a spatial database combining medical intelligence and satellite- derived climate data to define the limits of ma- laria transmission. This initiative has succeeded in compiling an archive of community-based estimates of parasite prevalence drawn from 85 countries. In the search for new interventions to combat diseases of poverty, sharing and linking databases are clearly advantageous. Assembling findings on biochemical targets, genetics studies, and the pathogens themselves is vital to improve the speed of new drug and vaccine development. One such project is MalariaGen (10), in which researchers from 21 countries are collaborating to build a malaria genome database. This project has addressed some of the fundamental chal- lenges that are inherent to data sharing, such as the ethical challenges of recruiting participants and setting out clear agreements on data linking and release. Establishing a set of policies to ad- dress these issues has worked well for this net- work (11). Measuring the Potential of New Interventions Clinical trials are highly challenging in resource- limited settings, but obstacles are being countered by remote data-collection technology, as well as by distance learning and knowledge-sharing strat- egies. Open-source clinical trial data management systems (Fig. 2) permit international standard data management for noncommercial organiza- tions by removing the cost impediments of com- mercial clinical trial software (12). The rapid expanse of mobile phone networks, and more recently 3G (third-generation) technology, has transformed the potential for electronic direct data entry in even the most remote corners of the globe. The continual evolution of mobile net- works expands the possibility for clinical trials to be conducted to high data-quality standards in many regions and increases the professional net- working opportunities for local researchers. A scarcity of trained staff has limited some countries’ capacity to design and manage in- dependent trial programs without the involve- ment of external sponsors (13). Knowledge sharing will not only increase the numbers of skilled staff but also improve methods. The wiki concept (Web sites where content can be openly shared, changed, and developed) is likely to be an important contribution, because through this route researchers can share tools and protocols and improve the design and conduct of clin- ical trials. Large clinical trials to establish novel ap- proaches to disease management are needed, for example, to evaluate new uses for antibiotics or to assess treatment and management options for a variety of healthcare issues. Such trials generate large data sets that are too cumbersome for con- ventional publication, but increasingly these are being made available online. A good example of one recent large trial is the AQUAMAT study of hospitalized malaria patients, which enrolled 5425 patients across 11 centers in nine African countries. This trial provides supplementary data online, including enrollment figures, endpoint review, and quality assessments (14), all of which will benefit others planning similar trials or policy- makers needing more detail than that provided in the primary publication. Data to Drive Policy Change and Support Implementation Licensing of new drugs and vaccines, or gaining evidence for a new public health measure, is not the end in terms of collecting and sharing data. Changes in national treatment and management policies require ongoing data on safety and effi- cacy, quality of life outcomes, and health eco- nomic impacts hence, it is important that after implementation of any new intervention data con- tinue to be gathered. For instance, pathogens can become resistant to drugs hence, networks have been established that monitor changes in drug efficacy. For example, the World Wide Anti- Malarial Resistance Network of disease-endemic country researchers collates data to inform and respond rapidly to the malaria parasite’s ability to adapt to drug treatments (15). Pharmacovigilance provides long-term safety monitoring vital to the success of drug imple- mentation programs, but these activities generate Fig. 1. A health worker uses EpiSurveyor (www.episurveyor.org) free mobile data-collection software in Cameroon. [Photo reproduced with permission from J. Selanikio, www.DataDyne.org] www.sciencemag.org SCIENCE VOL 331 11 FEBRUARY 2011 715 SPECIALSECTION on February 11, 2011 www.sciencemag.org Downloaded from

large volumes of data that are difficult to handle. The World Health Organisation Collaborating Centre for Advocacy and Training in Pharmaco- vigilance aims to improve drug monitoring in developing countries (16) through the provi- sion of large shared databases, training programs, and resource development. Another project that embraces the advantages of open-source soft- ware and the ethos of data sharing is the Mil- lennium Global Village Project in sub-Saharan Africa. In this project, many ongoing research activities are linked by their Web-based pro- gram (17). Organizations are also using digital technology to support point-of-care diagnostics and treatment in remote regions poorly sup- plied with medical expertise and where treatment is hard to access, through the use of decision tree tools and access to resources and guidance. (18). There’s no doubt that taking knowledge to the community via smart phones and laptops holds enticing potential for health care under any circumstances. Issues and Challenges of Data Sharing and Capture The examples present the illusion that digital tech- nology is being readily adopted in global health research unfortunately, this is not yet the case. The reality is one of unreliable electricity supply, not enough computers, and numerous and seemingly trivial (but cumulatively limiting) frustrations. Even simple equipment failures can become insuperable problems if parts are expensive to obtain and en- gineers are rare. In describing the issues they faced in setting up an electronic system to support clin- ical decisions in HIV care, a group in Kenya con- cluded that the ability to recognize and adapt to the specific needs of resource-limited settings was fundamental to successful implementation (19). Thus, the difficulties of applying digital tech- nology and data capture in developing-world settings are both practical and philosophical. The practical challenges encompass the range of physical and technical mechanisms of capturing, handling, and storing the data. This includes ac- cess to the technology and equipment, as well as skills training. There are still gaps in funding and knowledge to be met. The matters of individual and organizational attitudes to digital technology and adoption of a wiki culture are not so easy to address and depend on the acceptance and un- derstanding of new technology and concepts to realize the potential they hold. An essential component for successful adop- tion of digital media is the willingness of scien- tific communities to share data (20). Researchers acknowledge that data sharing increases the im- pact, utility, and profile of their work. Converse- ly, research is highly competitive (21, 22), and publications depend on individual ability to produce novel data, which can be a disincentive for collaboration. There are also major ethical considerationsin sharing data between researchers and between countries and in making data available for open access. The issues around consent and ownership are yet more complex within networks. Common frameworks and defined principles first GlobalHealthTrials.org T China Afghanistan Pakistan India Indian Indian Ocean Ocean Sudan Chile Chile Home Guidance & Resources The Network Regional Faculties Join now - it's free Sign in Search How would you handle this data management dilema? http://www.globalhealthtrials.or... A novel trial in Cameroon http://www.globalhealthtrials.or... West African Regional Faculty is operational. Invite colleagues to your courses, share knowledge and network locally to support all trials Over 700 members from 56 countries. Get involved in building this knowledge sharing platform for all trial staff working in Global Health Would you like us to turn your clinical trials training courses into e-learning modules that others can benefit from? Just let us know! Follow us on Twitter @GHealthTrials PARTICIPATORY ACTION RESEARCH L AT E S T Take part in studies to improve how we run trials CPD Scheme eLearning Modules Start a discussion Write a blog Submit a guidance article EDUCATION & TRAINING CONTRIBUTE North Atlantic Ocean Peru Brasil Mexico Venezuela Chile South Atlantic Ocean Indian Ocean Colombia Bolivia Algeria Libya Egypt Chad DR Congo Angola Namibia South Africa Madagascar Saudi Arabia Iraq Iran Indones Indonesia United United States States Map Satellite Hybrid Terrain Fig. 2. Global Health Trials is a free, open-access collaborative program that aims to promote and to make easier the conduct of noncommercial clinical trials across all diseases in resource-poor settings by providing guidance and support and enabling the sharing of best practice. [Image reproduced with permission from www.globalhealthtrials.org] 11 FEBRUARY 2011 VOL 331 SCIENCE www.sciencemag.org 716 on February 11, 2011 www.sciencemag.org Downloaded from