A Comprehensive Information Resource on ...

THE JOURNAL OF ALTERNATIVE AND COMPLEMENTARY MEDICINE Volume 7, Number 6, 2001, pp. 723–729 Mary Ann Liebert, Inc.

A Comprehensive Information Resource on Traditional, Complementary, and Alternative Medicine: Toward an International Collaboration FREDI KRONENBERG, Ph.D.,1 PAT MOLHOLT, Ph.D.,1 MARCIA LEI ZENG, Ph.D,2 and DANIEL ESKINAZI, D.D.S., Ph.D., L.Ac.3

ABSTRACT Objectives: A prototype for a comprehensive information resource for traditional complementary and alternative medicine (TCAM) has been developed to fill the condiserable needs of a broad audience for worldwide access to TCAM information. The proposed resource is to be a comprehensive, vocabulary-controlled, integrated, standardized, multimedia information resource for TCAM. It will facilitate international cooperation, promote synergistic development of individual resources, promote dissemination of TCAM knowledge, and map the interrelationships among the TCAM traditions. Methods: We organized two workshops for representatives of international databases that contain significant information on various aspects of alternative medicine. For the first workshop, we prepared and demonstrated a prototype named Complementary and Alternative Medicine Digital Library (CAMed) to illustrate the anticipated structure, content, and functionality of the comprehensive resource. We then constructed a second prototype to demonstrate the possibilities of searching across the collaborating databases and presented it to the representatives at the second workshop. Outcomes: Representatives of nine international databases attended the two workshops, in Bangalore, India (1998), and in Seoul, Korea (1999). We presented the prototypes at the workshops. Prototype I uses a Web interface, and supports browsing and searching from a variety of access points. Prototype II demonstrates a functional system that provides simultaneous access to selected represented databases by searching thesauri of these databases through our system. The group formalized itself as the International Collaboration for Information on Complementary and Traditional Medicine (IC2TM) with a goal of fully realizing the potential of the project.

INTRODUCTION

I

nformation, both print and electronic, is becoming increasingly available to a worldwide audience. In the area of Western medi-

cine, this trend is clearly visible. For example, MEDLINE, a major source of professional medical information originally primarily accessible to biomedical researchers, physicians, and other clinicians, is now publicly and freely

1 The Richard and Hinda Rosenthal Center for Complementary & Alternative Medicine, Columbia University, College of Physicians & Surgeons, New York, NY. 2 Kent State University School of Library and Information Science, Kent, OH. 3 West Chester University of Pennsylvania, West Chester, PA.

723

724

available on the Internet. A Directory of Databases, developed and maintained as an electronic resource on the Columbia University Website (http://cpmcnet.columbia.edu/dept/ rosenthal/Databases.html) and described in detail (Wootton, 1997), outlines important research resources for complementary, alternative, and traditional systems of medicine. Despite this trend, there are pockets of medical information that are not readily accessible, particularly in other countries. In the area known broadly in the United States as complementary and alternative medicine (CAM) (which includes traditional systems of medicine; for the purposes of this paper, we will refer to as TCAM), information is still relatively difficult to access. Yet, this area has undergone an exponential increase in attention, particularly in terms of public demand for information, attested to by the increase in media coverage of the topic, and the rapid creation of Web sites focusing on or with information about TCAM. Following on this public interest, insurance companies and health maintenance organizations (HMOs) are beginning to cover alternative modalities, and increasing numbers of physicians are interested in incorporating TCAM modalities into their treatment strategies (Berman et al., 1995). However, even for the relatively limited information available, the accuracy and reliability of the information is difficult to assess. Although on average, TCAM information is not readily available, there exist a growing number of information resources, some quite sophisticated and comprehensive in limited areas of this vast field. Some of these resources are in electronic form, some in the form of paper documents. Existing information resources include bibliographic databases, specialized library collections, ethnobotanical registries, databases on traditional systems of medicine, especially the medicinal plants, their pharmacology, toxicology, and physiologic actions, TCAM-related sites on the Internet, and others. Access to TCAM literature through bibliographic databases remains elusive for several reasons. First, the target audiences often must be highly specialized and understand the special conventions and notations used in the database. Second, the databases are often only

KRONENBERG ET AL.

available in one language, with no multilingual thesaurus to guide users. Third, the resources have been developed individually, and their format and search strategies are different from one another. Finally, they are often not shared outside the country of origin, perhaps because there is no easy distribution system or licensing system, or because there has been no mandate to distribute the information more widely. Therefore, the burden for identifying the resources and determining their individual optimal search strategy rests with the user. These tasks are not easy given the already considerable undertaking for researchers and physicians to keep up with their own fields of research and practice. The combination of these characteristics contributes to rendering the existing international resources user-unfriendly, especially for the public. There is currently no thesaurus-controlled, integrated, standardized, multimedia information resource available that authoritatively brings together text and image material that describes and illustrates various TCAM modalities and their cultural variations and contexts. CONSTITUENCIES OF A COMPREHENSIVE TCAM RESOURCE Interest in a TCAM resource is varied and widespread. The public of many countries is increasingly using TCAM health care approaches (Eisenberg, 1998; Fisher and Ward, 1994; MacLennan et al., 1996). In some cases, CAM approaches are considered a relatively new form of treatment (for example, in some Western countries such as the United States). In other countries, traditional indigenous forms of health care are being revived, strengthened, or expanded (Bodeker, 1995). It is clear that many segments of the population, in many countries, need easier access to the relevant information. Scientists are recognizing the need to generate basic and clinical research with direct treatment and policy relevance. Research in TCAM is hampered by a lack of coordinated effort, easy exchange of results, and ready access to information by researchers and practitioners. Access to information is a prerequisite to the

CAM INFORMATION RESOURCE

development of coherent and coordinated research programs, as researchers need to understand the dimensions of, and the progress in, their field, and to seek optimal collaborations. The formulation of research questions and the generation of hypotheses cannot occur effectively in an information-poor environment. Conventional and alternative medicine practitioners have concerns over the degree of safety, alongside growing use of TCAM treatments. As Western trained clinicians become aware of the undeclared use of TCAM by patients, they are increasingly concerned about the possible confounding effects of such use, because some herbs may interact with prescribed or over-the-counter medications, and/ or with clinical trial protocols. It is, therefore, important that clinical research address these issues by studying TCAM therapies alone, and in combination with standard medical treatments. Some information in this area already exists, but access to it is also limited. Increased access to existing information and development of additional integrated collections of bibliographic information on traditional, complementary, and alternative medicine are urgently needed to underpin clinical research. Observing the national and international trends, health care providers and insurers, botanical, nutraceutical, pharmaceutical, and other companies are anxious to enter the TCAM arena, particularly in the area of natural products. They are looking for substantive information on which to base their business decisions, and to help them plan their development strategies. Multiple media interests are in a perpetual quest for background and other information for stories, newspapers and magazines, on radio, television and electronic forum. They want rapid access to authoritative information. State and federal legislation is establishing new legal rulings on TCAM practices. Comprehensive information is crucial to informing the development of sound public policy. Both legislators and practitioners need to be kept current in an atmosphere of change. All of the above audiences would benefit from simplified access to a comprehensive information resource.

725

CRITICAL EVALUATION OF EXISTING INFORMATION Key issues we have identified include: The lack of effective and efficient means of accessing diverse information sources on TCAM. Current online medical bibliographic databases have a limited coverage of information on CAM. The British Library’s AMED (Allied and Complementary Medicine) database, is dedicated to CAM. Chinese, Japanese, French, and other databases exist around the world, often with overlapping journal coverage and only regional or national availability. Limited standardization of terminology is used to describe CAM. The National Library of Medicine has only a handful of terms available in its Medical Subject Headings with which to index TCAM literature. As a result, one retrieves a largely undifferentiated set of articles that requires considerable work on the part of the user. Some citation databases such as the French database on acupuncture (ACUBASE) have a thesaurus in French and English, but there is no link to the Chinese thesaurus used with ACULARS (the State Administration of Traditional Chinese Medicine database). There has been little communication among different database producers about terminology. Efficient access means not only physical (or electronic access), but also intellectual access to the knowledge. Western researchers unfamiliar with the concepts and practice of various traditional systems of medicine, for example, will have difficulty even knowing what terms to use to retrieve the information they want. The concepts and categorizations of disease states in Western medicine often have no obvious parallels or similar terminology in other traditions, where different concepts of illness and imbalance exist. Development of a general conceptual framework can make it possible to navigate a wide variety of information sources (Zeng et al., 2001). There is a lack of convenient access to various knowledge, both text and images. In addition to bibliographic information, other kinds of information are important, yet relatively inaccessible or unknown. Reference books in various languages, some hundreds of years old, exist in libraries throughout the world. Many

726

of these books have information about herbs and ethnomedical use of these herbs, including drawings, and more recently, photographic images. These are important traditional sources of indications and contraindications, and they often have produced the impetus for careful research in the West. Despite the existence of TCAM materials in various print forms, there has been limited exploration of electronic access and distribution of knowledge about TCAM through modem means and media, such as multimedia technologies and digital library collections. There is little standardization, control, or evaluation in some commonly accepted way, of the quality, coverage, and format of current databases developed by various organizations around the world.

STEPS TOWARD A COMPREHENSIVE TCAM INFORMATION RESOURCE In 1997, we initiated an information database project. The long-term goal of the project is to create a comprehensive TCAM information resource. This goal will be accomplished by coordinating and providing access to electronic and nonelectronic information on traditional, complementary, and alternative medicine collected from around the world. The first steps toward this goal have been to (1) develop a prototype for a fundamental portion of what will grow into the more comprehensive resource; (2) convene meetings of international leaders in the area of TCAM databases; (3) use the prototype to demonstrate to potential international collaborators, the considerable possibilities offered by collaboration, and to secure the participation of interested partners; and (4) develop a functional gateway system through which simultaneous access to selected represented databases are provided. The Bangalore Workshop In February 1998, we organized an international workshop on databases in the context of an International Conference on Medicinal

KRONENBERG ET AL.

Plants Conservation, Utilisation, Trade and Cultural Traditions in Bangalore, India. The purpose of the workshop was to define the scope and terms of a potential international collaboration on databases of information related to alternative, complementary, and traditional medicine. This workshop was attended by individuals in positions of responsibility and with decisionmaking authority for the databases they represent. The databases that had representatives attending were: NAPRALERT (University of Illinois, Chicago, IL); CATS-AMED (British Library, London, United Kingdom); ACUBASE (University of Medicine of Montpellier, France); ACULARS (China Academy of Traditional Medicine); TRADIMED (Natural Products Institute, Seoul University, Korea); JICST/JICSTE (Japan Information Center for Science and Technology, Tokyo), JMEDICINE (The Japan Institute of Science and Technology, Tokyo); APINMAP and MAPA (the National Institute of Materia Medica, the National Institute for Science and Communication, New Delhi, India); the Institute of Materia Medica, Hanoi, Vietnam; and the Foundation for the Revitalization of Local Health Traditions (FRLHT, Bangalore, India). The African organization Prometra was also represented. CAMed Prototype I A first step was to develop a prototype for CAM that would address the need to create a unified, organized information resource for a wide range of complementary, alternative, and traditional medical practices. The strategy is to provide access to existing electronic and nonelectronic information on TCAM collected from around the world, as well as providing other types of information relevant to TCAM. The prototype named Complementary and Alternative Medicine Digital Library (CAMed) (in short, Prototype I), was presented at the Bangalore workshop to illustrate the anticipated structure, content and functionality of the comprehensive resource. It was developed as a collaboration among the Rosenthal Center for Complementary and Alternative Medicine and the Office of Scholarly Resources at Co-

727


lumbia University’s College of Physicians and Surgeons, and Kent State University’s School of Library and Information Science. CAMed Prototype I uses a Web-based interface, supports browsing and searching from multiple access points, displays information and knowledge via hyperlinks and multimedia technologies, and ensures electronic information delivery through the Internet, currently with a private Internet URL address. This prototype contains the following sections: Diseases/treatments—Allows search of the overall CAMed through particular diseases/conditions and treatments. Scientific Literature—Provides access to bibliographic databases in TCAM and general biomedicine areas. Vocabulary Tools—Helps users find and understand TCAM terms and their equivalents commonly used in various traditional systems and databases. Therapeutic Preparations (Materia Medica) and Devices—Offers a wide range of access to the images, descriptions, and profiles and various materials and devices used in TCAM. Resources for the Public and the Professionals—Includes directories of various public or professional organizations; ongoing research, government resources, educational programs, summary of scientific and other materials for the public. Sources of Information on Traditional Medicine—Includes traditional medicine books. Legal and Regulatory Considerations (e.g., acupuncture regulations by country/state; government regulations on botanicals) Encyclopedia of traditional, complementary and alternative medicine. A Guided Access to the Internet—Uses predefined knowledge classes and terminology to assist users in conducting efficient searches on the Internet.

of a comprehensive resources. Points of agreement are summarized below. 1. The majority of the group felt that a single resource can address the needs of the lay public, the practitioner, and the scientist, and that the concept of a broad-based resource should be pursued. 2. It was suggested that thought be given to issues of accessibility by those for whom the Internet currently is not an option. 3. It was acknowledged that intellectual property rights consideration should be an integral part of the development of this resource, because it will eventually include information coming from indigenous peoples. 4. It was unanimously recognized that in order to represent a landmark step to improve the current situation, a transcultural and transdatabase list of controlled terms should be established. Various suggestions were made as to how to approach this issue. They include the simple combination of existing thesauri, to an effort to define a transculturally valid conceptual organization of the controlled vocabulary. 5. It was decided that the next step would be the development of a fully functional prototype that would include: Representative samples from all the databases represented at the workshop; A set of controlled terms that will be initially compiled from existing thesauri; A search engine that will allow simultaneous searches in the participating databases (gateway model); and Harmonization and integration of some of the databases for which an integrated rather than a gateway model would be more beneficial. It was clear that the success of the whole rests on the continued success of the parts.

Consensus of the Bangalore Workshop

Prototype II

The consensus of the workshop participants was one of unanimous support for the concept

During the 6 months after the Bangalore meeting, collaborators sent sample records and

728

their thesauri and we developed a gateway tool for searching cross-databases and a multiple thesauri management and cross-database search system (named Prototype II). This system allows a database manager to manage and edit his or her thesaurus in his local office (in his or her country) through the Web interface, while the thesauri are deposited and hosted on a central server. The cross-thesaurus search function of the system allows a user to type one term and search all or any of the thesauri in this repository. Software matches the query against the thesauri and gives back all fully or partially matched thesaurus entries. The term search eventually enables a direct search in four bibliographic databases (samples) that we have successfully integrated in our prototype. The search function also extends to the full-text searching of all resources in Prototype I. Seoul workshop One year after the first meeting of this international database collaboration in Bangalore, we organized a second meeting in Seoul, Korea (November 1999) to review progress to date and plan future action. Most participants from the Bangalore workshop attended. We presented the Prototype II and received feedback from the participants. The group formalized itself as the International Collaboration for Information on Complementary and Traditional Medicine (IC2TM). The group set up its mission to improve world health and help education through the efforts of: 1. Providing worldwide access to comprehensive TCAM information; 2. Facilitating international cooperation; 3. Promoting synergistic development of individual resources; 4. Promoting dissemination of TCAM knowledge; and 5. Mapping the interrelationships among the TCAM traditions.

QUESTIONS STILL TO BE RESOLVED Many particulars of the information resource remain to be resolved. One primary issue is that of quality control. If there is to be tagging of in-

KRONENBERG ET AL.

formation as to its type and quality, a system for doing so would need to be established. There are some existing models that might be explored, including one used by the New York Botanical Garden to assess quality of information obtained from traditional healers. Most of the participants would like to see this resource be as accessible as possible, at as low a cost as possible (perhaps free or nominal fee for many and some fee to institutions/organizations). A determining factor would be the type of funding obtained for development. The organizing body for the resource consists, at the moment, of representatives from each database. As each new constituent database is brought into the group, they would send a representative to the governing body. Although the initial language of the database will be English, it will be important to add other languages (input and output) as soon as funding is available.

CONCLUSION A vast amount of information exists in various forms and of varying quality. It is critical that information be made accessible to a broad range of audiences, nationally and internationally. It is, therefore, important to develop a useful and user-friendly resource. Toward this end, we have developed an international collaboration in concert with several distinguished TCAM information database producers, and will continue to expand this group to be as complete as possible. We constructed a prototype, Complementary and Alternative Medicine Digital Library (CAMed) to demonstrate our vision for a comprehensive information resource for the TCAM community. In doing so, we began exploring technological solutions to the management of multiple thesauri, and the execution of cross-database searching. We have successfully created software for these purposes. An information resource in complementary, alternative, and traditional medicine has the potential to fill a considerable need and to contribute to the development of the field and to the consolidation of an international community of researchers and practitioners. One project will provide access to these resources in an


organized, comprehensive, user-centered manner. Until such a resource is available, the credibility of TCAM remains largely at the whim of personal and historical experience.

ACKNOWLEDGMENTS This project was made possible through partial funding from the Fetzer Institute, Mrs. Helaine Lerner, the Partnership Fund of the Vanguard Public Foundation, Dr. Kwang-Yul Cha of CHA General Hospital in Seoul Korea, and the National Institutes of health National Center for Complementary and Alternative Medicine (# U24 HD33199). We thank Ms. Carrie Lewis and Dr. Janet Mindes for their help in making the Bangalore and Seoul meetings a success, and for their helpful comments and suggests in the development of the Prototype I and the Seoul Symposium. We also wish to acknowledge the invaluable assistance of Yu Chen, Barbara Anderson, Eric Davis, and Long Xiao.

REFERENCES Berman BM, Singh BK, Lao L, Singh BB, Ferentz KS, Hartnell SM. Physicians’ attitudes toward complementary

729 or alternative medicine: A regional survey. J Am Board Fam Pract 1995;8:361–366. Bodeker G. Traditional health systems: Policy, biodiversity, and global interdependence. J Altern Complement Med 1995;1:231–243. Eisenberg DM, Davis RB, Ettner SL, Appel S, Wilkey S, Van Rompay M, Kessler RC. Trends in alternative medicine use in the United States, 1990–1997: Results of a follow-up national survey JAMA 1998;280:1569 –1575. Fisher P, Ward A. Complementary medicine in Europe. BMJ 1994;309:107–111. MacLennan AH, Wilson DH, Taylor AW. Prevalence and cost of alternative medicine in Australia. Lancet 1996; 347:569–573. Wootton JC. Directory of Databases for Research into Alternative and Complementary Medicine. J Altern Complement Med 1997;3:179–190. Zeng ML, Kronenberg F, Molholt P. Toward a conceptual framework for complementary and alternative medicine: Challenges and issues. Knowledge Organization 2001;28:27–40.

Address reprint requests to: Fredi Kronenberg, Ph.D. The Richard and Hinda Rosenthal Center for CAM Columbia University College of Physicians & Surgeons 630 West 168th St., Box 75 New York, NY 10032 E-mail: [email protected]

Copyright of Journal of Alternative & Complementary Medicine is the property of Mary Ann Liebert, Inc. and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use.