Health Informatics for Development

Health Informatics for Development: a Three- pronged Strategy of Partnerships, Standards, and Mobile Health Contribution of the IMIA Working Group on Health Informatics for Development A. Marcelo1, A. Adejumo2, D. Luna3 1 IMIA Health Informatics for Development Working Group Chair, National Telehealth Center, University of the Philippines Manila, Philippines 2 Health Information Systems Programme, Nigeria 3 IMIA Health Informatics for Development Working Group Co-Chair, Hospital Italiano, Buenos Aires, Argentina

Summary Introduction Methodology Objective: Describe the issues surrounding health informatics in de- Hersh [1] defines informatics as the Two methods were chosen for this pa- veloping countries and the challenges faced by practitioners in “discipline focused on the acquisition, per. One is through literature review building internal capacity. From these issues, the authors propose storage, and use of information in a and the other is through a survey with cost-effective strategies that can fast track health informatics devel- specific setting or domain”, If applied key opinion leaders and practitioners. opment in these low to medium income countries (LMICs). to health, he employs the term “bio- Literature search in Pubmed for the Methods: The authors conducted a review of literature and consulted medical and health informatics term “health informatics for develop- key opinion leaders who have experience with health informatics (BMHI)” and further qualifies it as the ment” yielded no matches. An alterna- implementations around the world. “optimal use of information, often aided tive search using Medical Subject Head- Results: Despite geographic and cultural differences, many LMICs by the use of technology, to improve ings for “health informatics” combined share similar challenges and opportunities in developing health individual health, health care, public with “development” revealed seventy- informatics. health, and biomedical research”. nine articles of which two were ex- Conclusions: Partnerships, standards, and inter-operability are well “Health informatics for development” cluded for irrelevance. Among the sev- known components of successful informatics programs. Establish- is a working group of the International enty-seven articles, the most recurring ing partnerships can be comprised of formal inter-institutional col- Medical Informatics Association dedi- themes were “public health”, “surveil- laborations on training and research, collaborative open source cated to investigating how health lance”, “geographic information sys- software development, and effective use of social networking. Lack- informatics capability can be built in low- tems”, “health information systems”, and ing legacy systems, LMICs can discuss standards and inter-operabil- to-medium income countries (LMICs), “open source”. Only nine articles were ity more openly and have greater potential for success. Lastly, since and conversely, how health informatics about countries in the Africa or Asia. cellphones are pervasive in developing countries, they can be can contribute to the their development. For the second method, key opinion leveraged as access points for delivering and documenting health Hersh’s definition resonates completely leaders and practitioners in developing services in remote under-served areas. Mobile health or mHealth with the health informatics found in de- countries were consulted. They were gives LMICs a unique opportunity to leapfrog through most issues that veloping countries although social, po- asked to provide a brief situational analy- have plagued health informatics in developed countries. By employing litical and economic issues manifest sis from their respective regions, to show this proposed roadmap, LMICs can now develop capacity for health more prominently in these countries [2]. examples of current state-of-the art and informatics using appropriate and cost-effective technologies. to list predominant issues that hinder them from experiencing the full benefits Keywords of health informatics in their regions. eHealth, mHealth, mobile, partnerships, information systems Objectives Yearb Med Inform 2011:96-101 Define the sub-domain of “health informatics for development” and rec- Latin America ommend a roadmap that developing The development of health informatics countries can take to fast track its up- has mixed results in Latin America. take in their local context. Although its contribution to better

IMIA Yearbook of Medical Informatics 2011 97 Health Informatics for Development: a Three-pronged Strategy of Partnerships, Standards, and Mobile Health

health care has been recognized, there Still Africa lags behind due to the the use of electronic means of com- are in fact only a few initiatives at na- relatively low penetration of ICT use munications. Last but not the least, tional scale in this region. These could in many African countries especially there are limited investments in build- be attributed to the low priority placed sub-Saharan Africa. Unstable electric ing capacity for health informatics in in health information management by power supply in many parts of Africa the region. ministries of health. This explains why has made the use of computers and other Similar to Latin America, govern- majority of the advances have been devices in health care an expensive and ments have been slow in adopting health made by the private sector creating a resource-consuming venture relegating informatics standards despite the strong huge divide that exacerbates the dispar- health informatics projects to small recommendations of experts including ity to access to such technologies. Most donor-driven interventions rather to the the World Health Organization [WHO]. health informatics research therefore larger national systems. Although available, health informatics come from private institutions with Mobile phones, on the other hand, leaders in the region have not interacted minimal involvement by government. have had tremendous success in Africa more closely. Training initiatives in medical infor- in the last 5 years and the region is one All three regions share, to some ex- matics, though existent, is progressing of the largest growing markets in the tent, social, political and economic chal- at a slow pace. Beyond education pro- world. The low cost and minimal en- lenges for their constituencies that dis- grams generated from Argentina [3], ergy requirements of mobile phones has tinguishes their attempts at developing Brazil [4], and Uruguay [5], there are opened new vistas for health infor- health informatics within their coun- few other projects of this type in the matics for development. tries from those in developed ones. rest of Latin America. The inclusion of The advent of open source technol- informatics as a subject in medical ogy in Africa has helped bridge the soft- schools is an important activity towards ware gap in the continent. The grow- creating a competent workforce. Re- ing use of open source software The Context for Health cently, several universities in Latin packages specially the District Health

America have started offering post- Information System (www.DHIS2.org) Informatics Development in graduate programs in health informatics. and OpenMRS (www.openmrs.org) is the Developing Regions By far the largest improvements have shaping the landscape of electronic data been in standards development with systems. Packages like DHIS have been Health informatics is a mature and Brazil[6] demonstrating its strength adopted as national templates for health well-recognized discipline in first through the formal adoption by the data management. The bias towards world countries. This could be attrib- Ministry of Health. Countries like Chile open source software was initially due uted to the ready availability of tech- [7] followed soon after but the rest of to the large costs incurred with propri- nology infrastructure that permits the the region has not responded as quickly. etary systems, but recently, the benefits in-depth study of the many facets of Furthermore, and perhaps related to the of full source code access and control the field. Since hardware, software, contribution of private enterprises, is are increasingly being recognized. and fast networks are available in these that most developments in health countries, they are naturally able to informatics are proprietary software, investigate the various nuances of and very few are open source. Asia health information management. These In conclusion, there are now begin- conditions are not readily available in ning interests in informatics initiatives The progress of health informatics in developing countries. Conventional hard- and state policies from several coun- Asia can be viewed as straddling be- ware such as servers and workstations tries in the region, but the majority re- tween that of progressive Latin are impractical in remote underserved mains private contribution. America and of up-and-coming Africa. areas plagued with power fluctuations. Several factors have made health Lacking the necessary technology in- informatics development challenging frastructure therefore, health infor- in this region. First is that it is com- matics capacity becomes limited and Africa posed of several archipelagos (Philip- expertise development stymied. With- Health informatics development in Af- pines, Indonesia, Malaysia, etc) mak- out the enabling technology environ- rica has seen a gradual rise in the field ing travel and networking difficult and ment, the necessary human resources over the last decade. This is due to the expensive. Second, unlike Latin America, to support health informatics cannot growing interest in the use of informa- there is no common language that be developed. Further, without the tion and communications technology connects all countries in the region. manpower, the field of health infor- (ICT), a phenomenon largely absent for Discussions become tedious and se- matics cannot be nurtured hindering the most part of the last decade. mantics are lost in translation despite development of formal training pro-

IMIA Yearbook of Medical Informatics 2011 98 Marcelo et al.

grams. This creates the vicious cycle interventions in these areas to be im- (PANaCeA), Réseau en Afrique that sets back health informatics de- plemented at the right time and in the Francophone pour la Télémédecine velopment in LMICs. right sequence. Building a sophisti- (RAFT), INDEHELA, and AMAUTA. In the area of software development, cated technology infrastructure with- use of proprietary software limits the out the capable manpower is not cost- The Health Informatics Building Blocks ability of local programmers to observe effective. On the other hand, developing The Health Informatics Building Blocks the full spectrum of software engineer- professionals in health informatics with- or HIBBs is a program developed by ing practices. Licensing serve as barri- out the appropriate technology environ- the American Medical Informatics As- ers to adoption and often become rea- ment may lead to frustrations and sub- sociation in which: sons for inability to innovate and to sequent migration. “...distance-learning supports clini- experiment with new software devel- An affordable and practical way to cal and health informatics training opment techniques. break this cycle is to establish collabo- in low-resource countries where In many instances, countries that are rations with first world institutions that greater understanding and use of just beginning with health informatics already have a wealth of knowledge in informatics and databases can en- do not have privacy frameworks that the domain of health informatics. This able better support of community can provide consumer confidence with partnership fast-tracks the input of fun- care and public health services. computerized health information sys- damentals to quickly bring the local This education initiative will pro- tems. This prevents health profession- human resource up to speed with the vide an infrastructure that enables als from trusting these new electronic theories required for successful imple- a broad audience such as commu- systems and from creating a support- mentations. nity health workers in developing ive ecosystem. These principles however should countries to acquire skills and One of the most important compo- be introduced through practical im- knowledge in informatics at little nents of successful health information plementations in local settings that or no cost to indigenous institutions systems is the adoption of standards. provide the environment to test and or individuals.” [8].

But due to the lack of local experts, validate these theories. It is a well Last February 2010, AMIA received LMICs are unable to leverage these known fact that principles established support from the Rockefeller Founda- standards even if they are available for in developed countries are not al- tion to implement HIBBs in sub-Saha- free. Without these standards, non- ways transplantable to developing ran Africa [9]. The target recipients of interoperable systems become the norm ones. Creating an collaborative im- the program will be primary care pro- and inter-operability becomes an almost plementation laboratory brings to- viders, technical staff and health impossible goal. gether theory and practice thereby ex- policy-makers. posing strengths and weaknesses in the prevailing frameworks. Global Health Informatics Partnerships A partnership could be a formal The American Medical Informatics Health Informatics for agreement between a local university Association (AMIA) created the Glo- and a foreign one to conduct train- bal Health Informatics Partnerships Development: a Three- ing and research in health informatics (GHIP) with a vision of “creating in- in the developing country setting. novative collaborations for trans- pronged Strategy This creates a mutually beneficial re- forming information into better Recognizing the unique problems of lationship to both schools: for the health for all.” GHIP aims to “im- LMICs, the HI4Dev Working Group former to rapidly gain access to prin- prove health care delivery world proposes a three-pronged strategy to ciples and to the experts who wrote wide by establishing and supporting facilitate development of health them, and for the latter to allow their an international collaborative learn- informatics in these challenging situa- theories access to real world informatics ing community focused on the use tions. These three are partnerships, in- implementations, an opportunity be- of health care information.” GHIP is ter-operability, and mobile health. coming increasingly rare in the devel- a partnership of partnerships with oped world. networks of health informatics advo- There are several examples of these cates contributing to the promotion of partnerships coming to fruition. There health information management to so- Strategy 1: Establish Partnerships is the Health Informatics Building cieties. It has strong focus on creating Given the vicious cycle of the tech- Blocks (HIBBs), the Global Health solutions that are “locally relevant and nology infrastructure challenges and Informatics Partnership (GHIP), PAN locally owned.” GHIP could provide a human resource deficiencies in devel- Asian Collaboration for Evidence-based venue to promote the partnership prong oping countries, it is important for e-Health Adoption and Application in the developing world.

IMIA Yearbook of Medical Informatics 2011 99 Health Informatics for Development: a Three-pronged Strategy of Partnerships, Standards, and Mobile Health

PANACeA Table 1 Projects funded by PANACeA The International Development Re- search Centre of Canada (IDRC) to- 1. A Systematic Review of Current ICT Application in Disasters - The Potentials of Integrating Telemedicine gether with the Aga Khan University 2. Economic Evaluation Framework of Computerization in Hospitals initiated the PAN Asian Collaboration for Evidence-based e-Health Adoption 3. Exploratory Intervention Research on eHealth for the Visually Challenged and Application (PANACeA) [10]. The 4. A Framework to Identify Gaps in the Use of eHealth in Primary Health Care Settings project started in February 2007 with 5. Improving Maternal Health Care Services by Using ICTs for Remote Consultation and Education the goal of generating evidence in the 6. Community-Based eHealth Promotion for Safe Motherhood: Linking Community Maternal Health Needs with field of eHealth within the Asian con- Health Services System text bringing together researchers from 7. Online TB Diagnostic Committees to Improve Case Detection in the TB-DOTS Program all over Asia. Eight eHealth projects 8. Portable System for Telehealth and Health Informatics in Rural and Remote Areas [THIRRA] were funded “to generate evidence for the adoption of technologically, eco- nomically and socio-culturally sound eHealth applications in multiple coun- Table 2 Examples of Social Networks in the Internet tries.” The eight PANACeA projects are shown in the table. MySpace: Usually used for cultural purposes, offers a website that can be customized with videos, photos, a blog and a whole PANACeA was able to gather ex- series of different and varied applications. perts in the region and provide them Facebook: It began as a college social network, but has become the largest network in the world. It is currently the network with an environment for exchanging with more registered users and their goals are mostly entertainment. ideas and expertise in eHealth who, Flickr: A photo-sharing network and amateur photographers. themselves, collaborated using readily Skype: Not just a social network, but a phone and messaging service that is widely used worldwide. available tools. Twitter: A free service that allows users to send micro-entries or text-based short messages, called „tweets“ that can be Réseau en Afrique Francophone pour performed either by the Twitter website, or via a mobile phone. la Télémédecine or RAFT [11] has LinkedIn: Social network for professionals. webcasting of interactive courses as its core activity while INDEHELA [12] (Informatics Development for Health in Africa) is a long-term research programme that started as research partnership between the University of Partnerships to Collaborate on enough that it created the Open Source Kuopio, Finland, and the Obafemi Software Development using Free Working Group (please refer to this Awolowo University, Nigeria, in 1989. yearbook’s article on the OSWG). The The AMAUTA Global Training in and Open Source Software opportunities with FOSS are endless and Health Informatics program [13] was A significant gap in health informatics suffice it to say that it is an integral developed “to train Peruvian healthcare is the availability of a local group of component of the health informatics for professionals in the application of people who can technically support the development roadmap because of the informatics to health”. This collabora- needs of their health professionals. This unprecedented liberties it gives to de- tive program is an institutional partner- limitation is brought upon by a com- velopers to create their own applications ship between Universidad Peruana plex set of factors that range from lack that can transform their health systems. Cayetano Heredia (UPCH), Universidad of access to hardware to expensive li- Nacional Mayor de San Marcos, and the censing fees for software development. University of Washington (UW), Seattle, These obstacles prevent local manpower Partnerships through Social Washington, USA, with the support of from controlling their projects keeping the Fogarty International Center (FIC)/ them dependent on proprietary entities Networking National Institutes of Health (NIH). whose interests may not be completely Social networks have become a truly Summing it up, in the true spirit of aligned with their own. significant new phenomenon in human global health, these examples of col- Free and open source software communication and have a profound laborations are able to meld best prac- (FOSS) is a well known phenomenon impact on the way that people commu- tice and lessons learned and employ in software engineering that contributes nicate and connect with each other. In them in resource-constrained settings to technical and organizational capac- the social sciences, a social network is that can directly address the health ity in health informatics. The IMIA has an organization of people who relate needs of their citizens. considered FOSS to be significant to each other tightly or loosely.

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On the Internet, social networks benefits for shifting to electronic re- simple example of SDMX-HD is to are web-based services that allow porting formats, mechanisms and ca- exchange data about number of ma- people who share certain profiles pacity to move to this new modality ternal deaths in a year. Previously, this (such as professional background, en- are lacking. This situation, though data would be sent in different formats tertainment preferences, advocacies, challenging, offers a unique opportu- (as a document, as a spreadsheet or or networks of patients) to community for them. presentation slides) or in varying reso- nicate their experiences and knowl- Health informatics standards have lutions (village, to province, to re- edge. These services promote inter- been a challenge for the developed gions) making consolidation and com- actions among people, known or world. Because of the readily available parisons between countries difficult. unknown to each other, but who share technology infrastructure, implemen- SDMX-HD defines the parameters for something in common. tations were created before the need submitting specific data, its format and Recent advances in technology have for standards was realized. This re- semantics, thereby limiting inconsist- made it possible to easily access and sulted in undesirable situations such as encies in definition. use social networks. Investments in us- having many electronic medical ability allow many with limited instruc- records that are unable to communi- National Standards for Geographic tion or training to access a network site. cate effectively with each other. The Codes This has made social networks on the lack of standards during the formative The health information cycle essen- Internet very viable communication period when such were needed to guide tially involves the collection, analysis, and collaboration tools for health implementation is now causing a presentation and use of health data. informatics. number of interoperability problems. Though all these steps are important, By employing social networks, The developing world can be spared presentation of health data deserves health informatics for development can: of this problem if they embrace a com- special mention because it has the • encourage participation and collabo- mon standard early in their implemen- greatest potential to influence decision- rative work between people, allow- tations. If standards are adopted, the making by program managers. ing users to participate in an online cost of implementation can be brought One effective method for present- project from anywhere. down significantly and disseminating ing data is through maps. Due to its intuitive nature, maps are often used • allow the creation of a virtual iden- semantically-consistent health infor- to present complex datasets to non- tity that can be used as vicarious rep- mation systems can become possible technical people. This field is called resentations of oneself during these on a national scale. GIS or geographic information sys- collaborative sessions. This allows To maximize the benefits of stand- tems, and in recent years, it has gained a person to share many facets about ards, developing countries must un- strong support in the heath sector for himself like hobbies, beliefs, ide- dergo a process of defining their health its simplicity in presenting actionable ologies, health information, and the needs and designing the enterprise ar- health information. Contributing to the like which contributes to strength- chitecture that can respond to them. popularity are the easy availability of ening the virtual relationship. Guided by this architecture, there can software for such as DHIS 2.0 and • facilitate relationships between peo- be greater confidence that all infor- GoogleMaps. ple, despite differences in culture. mation systems complying with it will In order to maximize the benefits • facilitate the collection of informa- be able to communicate effectively with each other. of maps however, all health data tion in a timely manner despite should be recorded with space and time physical barriers. Two important emerging standards • for developing countries are the dimensions. This allows researchers to facilitate comprehensive learning view health information from chrono- and allow implementation of con- SDMX-HD and the standard geographic codes. logical and spatial relationships. cepts acquired globally to a local Standard geographic codes which vary setting. SDMX-HD in each country, should be leveraged SDMX-HD is an abbreviation for Sta- by health informatics projects in or- tistical Data and Metadata Exchange der to be able to present spatially con- (SDMX)-based data exchange format. sistent data to decision makers. Only Strategy 2: Standards for It is intended to “serve the needs of through the use of the same geographic Inter-operability the Monitoring and Evaluation com- codes can maps about different do- munity.” SDMX-HD [14] was devel- mains (e.g., dengue or tuberculosis For most developing countries, health oped by WHO and partners to facili- or maternal care) be compared to information systems are still paper- tate exchange of indicator definitions each other and more complex analy- based. Although there are significant and data in aggregate data systems. A sis made possible.

IMIA Yearbook of Medical Informatics 2011 101 Health Informatics for Development: a Three-pronged Strategy of Partnerships, Standards, and Mobile Health

USA experience. Stud Health Technol Inform Strategy 3: Mobile Health - Conclusion 2006;122:800. 5. Margolis A, Vero1 A, Bessonart L, Barbiel A, Ferla Technology that People Can Health informatics requires the presence M. Health Information Systems Training for a of both appropriate technology envi- Countrywide Implementation in Uruguay. Methods Understand and Manage ronment and capable human resources Inf Med 2009;2009(1):153-7. The last strategy aims to promote the to be locally appreciated. The IMIA 6. Leão BF, Costa CG, Facchini LA, Bandarra EB, Working Group on Health Informatics Gonçalves SF, Bretas Jr N, et al. The Brazilian use of mobile phones for health. The health informatics and information policy: building growth of mobile phones in Asia and for Development proposes a three- the consensus. Stud Health Technol Inform Africa has far exceed that of the devel- pronged strategy to fast-track the in- 2004;107(Pt 2):1207-10. oped world [15]. In effect, these regions clusion of the developing world into the 7. Capurro D. Health informatics in Chile: responding have leapfrogged over desktops and larger community of health informatics to health reforms. Health Info Libr J 2007 practitioners, to wit: establish partner- Dec;24(4):287-91. workstations by going directly to these 8. Global Health Informatics Partnership [Internet]. portable devices. Because of this, there ships with other networks on health [cited 2011 Jan 31];Available from: http://ghip.net/ will soon be more people with informatics, adopt standards for inter- 9. Rockefeller Foundation Supports Expansion, cellphones in these two regions than operability, and leverage mobile health Training of E-Health Work Force in Developing there are desktops or laptops in the de- as a platform for implementation. Other World | AMIA [Internet]. [cited 2011 Jan 31]; tools which can be useful are social Available from: https://www.amia.org/content/ veloped world. Health informatics in rockefeller-foundation-supports-expansion- the developing world must seriously networks and free/open source soft- trainingof-e-health-work-force-developing-world consider mobile phones in their health ware. The availability of international 10. About PANACeA [Internet]. [cited 2011 Jan informatics implementations. As input networks such as the Global Health 31];Available from: http://panacea-ehealth.net/ Informatics Partnerships, PANACeA 11 WHO Geneva University Hospitals - RAFT Network devices, cellphones may be limited, but [Internet]. [cited 2011 Apr 21];Available from: http:/ their pervasiveness counters that limi- and the like brings these proposed strat- /www.who.int/workforcealliance/members_partners/ tation. Simple text-based reports may egies within reach of developing na- member_list/hugraft/en/index.html be entirely possible with mobile phones tions and they should take advantage 12. INDEHELA Programme, University of Kuopio

of them to rapidly nurture the field [Internet]. [cited 2011 Apr 21];Available from: http:/ [16]. Instead of overly complex data /his.uku.fi/indehela/ collected on paper, health workers could within their countries. 13. Curioso WH, Fuller S, Garcia PJ, Holmes KK, instead just submit simple data that sim- Kimball AM. Ten years of international collaboration ply signal the presence of health serv- Acknowledgements in biomedical informatics and beyond: the AMAUTA program in Peru. J Am Med Inform Assoc 2010 ices in a specific area. Global Health Informatics Partnerships Aug;17(4):477-80. The mobile phone is a unique phe- for the useful insights and references 14. SDMX-HD (Health Domain) [Internet]. [cited 2011 nomenon for various reasons. It prac- shared by its members in its mailing list. Apr 21];Available from: http://www.sdmx-hd.org tically spread out with minimal mar- 15.ICT Statistics [Internet]. [cited 2011 Jan 31];Available from: http://www.itu.int/ITU-D/ict/ keting, without a central authority statistics/ict/index.html requiring the purchase except the per- References 16. Mahmud N, Rodriguez J, Nesbit J. A text message- sonal need to communicate. With it, 1. Hersh W. A stimulus to define informatics and based intervention to bridge the healthcare health information technology. BMC Med Inform communication gap in the rural developing world. people were able to text or call each Technol Health Care 2010;18(2):137-44. other despite the geographic challenges Decis Mak 2009;9:24. 2. Macfarlane SB. Harmonizing health information 17. Akter S, Ray P. mHealth - an Ultimate Platform to posed by the archipelagos. It also pre- systems with information systems in other social Serve the Unserved. Yearb Med Inform 2010;:94-100. sented an interface that was easy to learn and economic sectors. Bull World Health Organ and master. Health informatics for de- 2005 Aug;83(8):590-6. Correspondence to: velopment must investigate the frontiers 3. Otero P, Hersh W, Luna D, González Bernaldo de Alvin Marcelo of mobile phones and their use in health Quirós F. A medical informatics distance-learning University of the Philippines Manila course for Latin America. Translation, implementation National Telehealth Center to be able to quantify the value such and evaluation. Methods Inf Med 2010;49(3):310-5. Manila, Philippines networks can contribute to better health 4. Marin HF, Massad E, Marques EP, Ohno-Machado Tel: +632 525 6501 of the people [17]. L. A certificate program in health informatics: Brazil/ E-mail: [email protected]

IMIA Yearbook of Medical Informatics 2011