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Kidney International, Vol. 68, Supplement 98 (2005), pp. S89–S94

Electronic strategies for information and research: cyberNephrology/cyberMedicine in the emerging world

KIM SOLEZ,MICHELE HALES, and SHEILA MORIBER KATZ

The National Kidney Foundation cyberNephrology Center, Department of Laboratory Medicine and Pathology, University of Alberta, Edmonton, Canada; and cyberMedicine Joint Venture, Gladwyne, Pennsylvania

Electronic strategies for information and research: cyber- of communication and medicine. This can be likened in Nephrology/cyberMedicine in the emerging world. Com- importance to the production of the first hieroglyphs in munication and medicine have evolved together. the Nile delta more than 5000 years ago. Accounts of the resources now provide an unprecedented opportunity to pro- vide health assistance to the developing world. The In- history of communication often begin with the history ternational Society of Nephrology Informatics Commission of writing, the earliest cave paintings as old as mankind and National Kidney Foundation cyberNephrology initiative itself, Egyptian hieroglyphics dating from 3500 BC, and (http://www.cybernephrology.org) have created e-mail discus- the later creation of the alphabet by the Phoenicians and sion groups (e.g., NEPHROL, NEPHKIDS, and so forth) Sumerians. Sir William Osler, in his book The Evolution and online texts and web resources (e.g., the Schrier Atlas: http://www.kidneyatlas.org) that are, in many respects, ahead of Modern Medicine [1], also dates the history of medicine of other areas of medicine. On the other hand, nephrology from ancient Egypt. Medicine and communication thus is quite behind in its embrace of some specific communica- have evolved—are evolving—together. tions initiatives that could benefit emerging nations: the Health In the beginning, writing was only for those specifi- InterNetwork Access to Research Initiative program, which cally trained in the craft as a profession. Not even rulers, provides free full-text access to medical journals and books in poorer countries; the Global Health Network Supercourse, kings, and queens could write; they had scribes do their which provides specially designed online lectures for the devel- writing for them. In its infancy, the Internet was simi- oping world; and /Abilene and similar research net- larly restricted to computer professionals and those with works around the world, which provide reliable, guaranteed a special interest. That changed in the early 1990s as the bandwidth for high-quality Internet videoconferencing as an resource became mainstream. alternative to face-to-face lectures and meetings. The intent of many educational ventures in nephrology, particularly in the clinical practice guideline realm (National Kidney Foundation Kidney Disease Outcomes Quality Initiative, Kidney Disease NEPHROLOGY AND THE INTERNET: Improving Global Outcomes, and so forth), is not just to dis- cyberNEPHROLOGY seminate information but to change human behavior: physi- cian practice and referral patterns, patient compliance, and so Nephrology is in an unusual situation with regard forth. Concepts from the worlds of marketing and entertain- to informatics—use of Internet resources. On the one ment, where the science of changing human behavior is highly hand, through the resources of the International Soci- evolved, can be used to create high-impact, educational of- ety of Nephrology (ISN) Informatics Commission, the ferings to promote health. They can also be highly beneficial to share Internet educational innovations and future vision National Kidney Foundation (NKF) cyberNephrology across boundaries of medical specialties, which is part of the (http://www.cybernephrology.org), and others, it is better intent of the cyberMedicine joint venture (http://www.cyber- served with e-mail discussions groups and electronic com- medicine.org). munication and educational resources than just about any other medical specialty (Table 1). Nephrology is techno- logically and substantially ahead of other specialties, with FROM ANTIQUITY good futuristic vision embodied, in part, by the cyber- The advent of the Internet and the World Wide Web Medicine Joint Venture (http:/www.cyber-medicine.org). (WWW) is a pivotal landmark in the combined histories Some specific examples of nephrology innovations: The NEPHKIDS e-mail discussion group brings together parents of children with renal disease, pediatric renal Keywords: technology convergence, medical future, telemedicine, physicians, and young adult patients who had renal dis- Banff classification, wireless Internet, Disaster Relief TaskForce, Acute ease as children, and so can provide many useful insights Renal Failure Commission. from their experiences. Nothing like this exists in any C 2005 by the International Society of Nephrology other area of medicine. Comparable e-mail groups in

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Table 1. ISN Informatics/NKF cyberNephrology e-mail discussion groups with topics NEPHROL—general nephrology, all subjects including renal pathology and transplantation NEPHADMIN—for nephrology administrators NEPHBSCI—nephrology basic science discussion NEPHCNPT—discussions of individual clinical nephrology cases NEPHDEVEL—discussion of humanitarian projects and COMGAN/ISN Sister Centers Programs NEPHINDIG—discussion of renal disease in indigenous peoples NEPHJNL—nephrology/transplantation journal club NEPHMIN—a stripped-down version of NEPHROL with all repetition and US-specific content removed, designed for developing countries NEPHNPPT—discussions of individual renal biopsy cases NEPHRONOL—Spanish-English discussion of nephrology subjects ARABNEPHROL—Arabic-English discussion of nephrology subjects NEPHHIST—history of renal medicine, ISN Video Legacy Project interview transcripts MDDIALYSIS—for US dialysis unit directors RENALPRO—e-mail list for nephrology professionals—nurses, and so forth RENALRD—a listserv primarily for those in renal nutrition KIDNEYDISEASE—for adult patients with renal disease NEPHKIDS—for parents of children with renal disease TAWASOL—Arabic group for adult patients with renal disease diabetes, for instance, are largely anonymous with none of dressing information poverty [2]. Compared with the US the sense of the closely knit community that NEPHKIDS $100 or more that it costs to send a paper copy of a weekly engenders. journal to an institution in Africa for a year, it costs pub- The Schrier Atlas of Diseases of the Kidney is also a lishers virtually nothing to give that same institution free unique medical textbook with 66 chapters covering all access to an electronic edition of a journal. Publishers in areas of nephrology, completely free in its online version the developed world are unlikely to incur significant fi- (http://www.kidneyatlas.org). It is designed specifically nancial loss by offering free or reduced-price access to for the web, with every page made visually interesting their online material. On the other hand, they may ben- through use of excellent illustrations, limited text made efit from the increased exposure of their journals and an up for by detailed figure legends, and so forth, with excel- improved public image. lent searching capabilities, full-color images, and a pre- WHO, in collaboration with the BMJ Publishing formed Microsoft PowerPoint file for each chapter with Group, approached the world’s 6 largest medical jour- graphics, so the user can just add custom text (Microsoft nal publishers to try to improve access to scientific infor- Corp., Redmond, WA, USA). Whole chapters of just in- mation for researchers in the developing world through dividual segments of chapters can be downloaded easily. online provision [2]. In a meeting at the United Nations in On the other hand, nephrology is, in some ways, quite March 2001, the 6 publishers agreed to provide access to behind. Many parts of the world where civilization be- all of their online journals for free or at deeply discounted gan are now in great need of assistance with access to rates through HINARI. electronic medical information. Yet, the 2 major health HINARI was launched in January 2002 [2] and ini- informatics efforts that benefit the developing world tially allowed not-for-profit institutions in countries with in medicine generally, the World Health Organization a gross national product per capita of less than US $1000 (WHO) Health InterNetwork Access to Research Initia- per year to receive free online access to more than 1500 tive (HINARI) [2, 3] and the Global Health Network Su- journal titles. In January 2003, the initiative expanded to percourse initiative, are virtually unknown in nephrology allow institutions in countries with a gross national prod- [4–6]. No nephrology organization sites describe or link uct per capita of between US $1000 and $3000 per year to these initiatives, and no nephrology publications (be- to access the online material now available through HI- fore this one) mention them. Of the 1803 medical lectures NARI, estimated to be worth more than US $750,000, available in up to 17 languages in the National Library of for US $1000. Money raised from these small fees is used Medicine Supercourse, none are specific to nephrology! to train librarians and researchers in information tech- HINARI has an interesting history [2]. In April 2000, nology, so that the best use can be made of the informa- a group of researchers from developing countries, con- tion now available to them. The number of publishers vened by the WHO, concluded that the best way to help involved in HINARI has enlarged to 50, providing access with their information deficit was to improve their access to more than 2400 journals and other full-text resources. to published literature. At that time, 56% of institutions HINARI is now used by more than 1100 institutions in in the lowest income countries had no current subscrip- 102 countries (out of a total of 113 eligible countries) [2]. tions to international journals, and 21% had only 2 journal Because the HINARI program is almost unknown in subscriptions. nephrology, it almost certainly is being grossly underused WHO recognized that the recent revolution in infor- by developing world nephrologists worldwide, as is the mation technology had opened up an opportunity for ad- Supercourse (see below). Solez et al: cyberNephrology/cyberMedicine in the emerging world S-91

Table 2. Comparison of developments in nephrology with those in medicine in general Nephrology-specific developments General medical Internet developments 1992 WWW invented 1993 NURSENET created (Norris) GASNET created (Ruskin) 1994 NEPHROL, RPS-ONLINE and ISN-ONLINE created Global Dermatology Grand Rounds created (Drugge) Global (Solez/Hales) Health Network University proposed (LaPorte) MEDLAB-L created (Letendre) 1995 HDCN Created (Daugirdas) Internet Dermatology Society founded (Drugge) 1996 1997 ISN Informatics Commission begins, NKF cyberNephrology PubMed/Free Medline searching initiatedGlobal Health founded NEPHNPPT, NEPHCNPT, NEPHJNL, Network Supercourse begins (LaPorte) RENALRD, NEPHMIN created 1998 NEPHKIDS, NEPHDEVEL created 1999 KIDNEYDISEASE, NEPHRONOL created 2000 Schrier Atlas goes online INDIACYBERMED created, GASNET becomes private company 2001 KDOQI online, ARABNEPHROL created www.cyber-medicine.org created (Solez, Katz) 2002 HINARI initiated (WHO) 2003 KDIGO initiative begins

Abbreviations are: WWW, World Wide Web; HDCN, Hypertension, Dialysis, & Clinical Nephrology; ISN, International Society of Nephrology; NKF, National Kidney Foundation; KDQOI, Kidney Disease Outcomes Quality Initiative; KDIGO, Kidney Disease Improving Global Outcomes; HINARI, Health InterNetwork Access to Research Initiative; WHO, World Health Organization.

The Global Health Network Supercourse (http://www. Despite the long history of antecedent events outlined pitt.edu/∼super1) is a collaborative project involving in the beginning of this article and below, the history of more than 10,300 faculty from 151 countries aimed at de- the mainstream use of the Internet in medicine is short, veloping a “library of lectures” related to epidemiology, beginning only with the advent of the WWW in 1992. One the Internet, and global health. The goal of the Super- can follow,in parallel, the timeline of developments in use course is to provide physicians and other health person- of the Internet in nephrology and in medicine in general nel around the world, especially those who teach others, (Table 2). Here, we have concentrated on resources we with the best available information on medical subjects. created, because that is what we know best. The Supercourse is based on several concepts, including When the ISN Commission on Acute Renal Failure information-sharing, quality control, and global access. (ARF) was established by Kim Solez in 1989, it made use The model lecture is on the subject of Prevention of Dis- of an extensive worldwide fax network. At the same time, ease. Currently, 1803 lectures are available from scientists the word processor and personal computer were super- around the world using cutting-edge cognitive design. seding the typewriter. These revolutions in communica- Each lecture serves as a “locator” with hypertext links to tions technology did not represent simple replacement of other pertinent information on the Internet. All lectures one instrument by another, but rather in a whole new way are reviewed for quality by the global faculty and others of working, and so it continued. and evaluated annually. Hence, lectures remain current, In 1991, the First Banff Conference on Allograft relevant, and of high quality. Mirrored sites of the Super- Pathology was held as an activity of the ISN ARF course have been established to increase the accessibility Commission. The conference was directed by Kim of the Supercourse in areas of the world that may have Solez and Lorraine Racusen, with practical organi- limited connectivity. The lectures themselves are models zation provided by Michele Hales. This important of simplicity and of a small file size so they can be easily consensus-building conference, which continues every 2 downloaded quickly, even through a slow Internet con- years under the same organizational structure (http:// nection. The intent is to use an Internet-based, lecture- cybernephrology.ualberta.ca/Banff), led to the Banff shaping model for transnational training so that teachers Classification, the worldwide standard for renal trans- are better equipped to train medical and health-related plant biopsy interpretation [7–9]. Initially, fax was the professionals worldwide. primary mode used not only in the Banff classification communications, but also in another important activity of the ARF Commission, the Disaster Relief Task Force cyberMEDICINE/cyberNEPHROLOGY under the leadership of Norbert Lameire which, in 1999, TIMELINE—AUTHORS’ EXPERIENCE successfully intervened in a major earthquake in Turkey, Soon, there will be more than 1 billion people using saving hundreds of lives [10–17]. the Internet, more than 15% of the world’s population, Beginning in 1994, e-mail and the Internet came to the with a large number using the resource to seek medical communicative forefront. In the fall of that year, Michele information. Hales and Kim Solez established the ISN site on the S-92 Solez et al: cyberNephrology/cyberMedicine in the emerging world

WWW, the home page of the Renal Pathology Society, Table 3. Internet2 International Partners (from and the NEPHROL e-mail discussion group. The first re- http://international.internet2.edu/partners/) nal biopsy images were sent over the Internet in early Americas Europe and Middle East 1995. Also in 1995, the Banff meeting became the first in- CANARIE (Canada) ARNES (Slovenia) CLARA (Latin America & BELNET (Belgium) ternational medical meeting which one could “virtually” Caribbean) attend via CD-ROM and the WWW.The first nephrology CEDIA (Ecuador) CARNET (Croatia) conference conducted by Internet videoconferencing oc- CNTI (Venezuela) CESnet () CR2Net (Costa Rica) DANTE (Europe) curred between Edmonton, Canada, and Milan, Italy, in CUDI (Mexico) DFN-Verein (Germany) December 1996. REUNA (Chile) FCCN (Portugal) Tremendous growth and diversification followed these RETINA (Argentina) GARR (Italy) RNP [FAPESP] (Brazil) GIP-RENATER initial beginnings. By 1997, there was justification for for- (France) mation of a separate Informatics Commission, coincident SENACYT (Panama) GRNET (Greece) with the creation of NKF cyberNephrology by the NKF. HEAnet (Ireland) Asia and Pacific Rim HUNGARNET Over the next 7 years, there has been increasing use of (Hungary) Internet videoconferencing. AAIREP (Australia) Israel-IUCC (Israel) Also in 1997, the NKF initiated the Disease Outcomes APAN (Asia-Pacific) NORDUnet (Nordic Countries) Quality Initiatives clinical practice guidelines [18–20]. ANF (Korea) POL-34 (Poland) ThecyberNephrology initiative played a major role in APRU (Asia-Pacific) Qatar Foundation putting the guidelines that have emerged from 1997 to (Qatar) CERNET, CSTNET, RedIRIS (Spain) now on the web in a user-friendly format. In 2003, the Kid- NSFCNET (China) ney Disease Improving Global Outcomes project began, JAIRC (Japan) RESTENA (Luxemburg) which will bring all the kidney disease guidelines together JUCC (Hong Kong) RIPN (Russia) SingAREN (Singapore) SANET (Slovakia) in 1 portal and allow comparisons between the major En- NECTEC/UNINET Stichting SURF glish language clinical practice guidelines in nephrology (Thailand) (Netherlands) worldwide. TANet2 (Taiwan) SWITCH (Switzerland) NGI-NZ (New Zealand) TERENA (Europe) JISC, UKERNA (United Kingdom) HELPFUL HINTS/TIPS FOR EFFECTIVE INTERNET USAGE Videoconferencing internet2.edu/partners/) (Table 3) working in partnership Just as nephrologists are unaware of HINARI and the with industry and government to develop and deploy ad- Supercourse initiative, they are also largely unfamiliar vanced network applications and technologies, and ac- with the educational uses of Internet2 and comparable celerating the creation of tomorrow’s Internet. Internet2 research networks around the world, and of the multi- is recreating the partnership among academia, industry, media alternatives to face-to-face teaching and meetings and government that fostered today’s Internet in its in- [21–25]. fancy. One of the primary goals of Internet2 is to promote A variety of options for video conferencing is available, high-quality Internet videoconferencing between univer- from the simple Windows or MSN Messenger on IBM- sities. compatible computers to the richer, full-screen videocon- Many developing countries are in the process of be- ferencing using the Apple iSight camera and iChatAV on ing added to the list in Table 3. For instance, on January Macintoshes (Apple, Cupertino, CA, USA), or the ViGO 20, 2004, plans for India’s own 2.5 GB/sec research Inter- system (VCON, Herzliya, Israel), to more elaborate, ded- net were announced. This network will allow very high- icated, H323-compliant, videoconferencing systems from bandwidth connections between educational institutions Sony and Polycom (Tokyo, Japan, and Pleasanton, CA, in India and with other institutions connected to Inter- USA, respectively). The best quality is obtained through net2/Abilene around the world, starting with connection a dedicated system with Internet2, which provides better between the All Indian Institutes of Technology and In- and more reliable bandwidth than the regular commer- dian Institutes of Management. cial Internet. It provides a richness of experience that Table 3 does not indicate the Internet2 capabilities of comes very close to a face-to-face encounter, at very lim- individual institutions. How do you know whether your ited cost, which necessitates a major rethinking of which institution and your Internet connection support Inter- educational offerings and meetings can be conducted re- net2 applications? motely. There is a free program for both the Macintosh and Internet2/Abilene (http://www.internet2.edu/) is a con- IBM-compatible computer, Internet2 Detective (http:// sortium being led by 206 US universities with a large detective.internet2.edu/), which offers computer users number of international partners (http://international. easy access to the status and capabilities of their current Solez et al: cyberNephrology/cyberMedicine in the emerging world S-93 network connection by providing information about ad- over 100 WWW sites for humanitarian ventures and vir- vanced network capabilities, including connectivity to an tual attendance at nephrology meetings have been cre- Internet2 backbone network, an estimate of available ated with thousands of images, PowerPoint files of lec- bandwidth, and multicast capabilities. Internet2 Detec- tures, and QuickTime movies (Apple). tive uses a simple interface to present information about a network connection that previously only advanced users or network engineers could obtain. Information about THE FUTURE OF cyberMEDICINE/ working through firewalls is provided. The Internet2 De- cyberNEPHROLOGY tective can save the user time and frustration by verifying The number of e-mail discussion groups has grown to that the network fulfills necessary requirements to sup- over 70, counting regular and digest groups, those run port specific applications like high-quality Internet video- from Edmonton, and those run from New York by Gary conferencing. Green, Director of the NKF’s New Technologies Divi- The resistance to use of Internet videoconferencing is sion. Recently, cyberNephrology has been making in- similar to the resistance to the Internet itself 10 years ago, creasing use of wireless connectivity with WiFi and GPRS, well-meaning but easily overcome as practical advantages using radio waves rather than wires to connect to the In- and simplicity of the medium become obvious. ternet; this greatly enhances our capabilities at meeting venues and in humanitarian projects with ISN Commis- Searching sion for the Global Advancement of Nephrology. Every user of the Internet spends considerable time With these emerging technologies, the Informatics searching for information, so a good search strategy is Commission and the NKF cyberNephrology’s goal is to essential. make the nephrology community aware of the true po- For general medical searches, one should always tential of modern communication technology. search Google (http://www.google.com/), which now has You can watch our embrace of these new technologies an index of 4,285,199,774 web pages as well as PubMed continue to evolve at: http://www.cybernephrology.org (http://www.ncbi.nlm.nih.gov/entrez/query.fcgi). Pages and http://www.cyber-medicine.org. from the past can be found on the “Wayback Machine” Reprint requests to Kim Solez, M.D., Department of Laboratory (http://www.archive.org/), which searches 11 billion Medicine and Pathology, 5B4.02 WCM HSC, University of Alberta, 8440 pages from the past. 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