Rising Expectations: Access to Biomedical Information

D. A. B. Lindberg, B. L. Humphreys National Library of Medicine, National Institutes of Health, Bethesda, Maryland, USA

Summary Introduction Genetic Sequences and Public Objective: To provide an overview of the expansion in public access Access to Research Data to electronic biomedical information over the past two decades, with Today's world has high expectations an emphasis on developments to which the U.S. National Library of regarding access to biomedical infor- The European EMBL Nucleotide Se- Medicine contributed. mation. People expect up-to-date, easy, quence Database (also known as Methods: Review of the increasingly broad spectrum of web- fast, reliable, and affordable access to EMBL-Bank) and the U.S. GenBank accessible genomic data, biomedical literature, consumer health a wide spectrum of information from both celebrated their 25th anniversaries information, clinical trials data, and images. Results: The amount of publicly available electronic biomedical basic scientific data to published lit- in 2007. Possibly more significant was information has increased dramatically over the past twenty years. erature to health information written the 20th anniversary of the International Rising expectations regarding access to biomedical information were for the general public. Of course, per- Nucleotide Sequence Consortium, stimulated by the spread of the Internet, the World Wide Web, ceptions of what constitutes up-to-date, which connects these European and U.S. advanced searching and linking techniques. These informatics easy, fast, reliable, and affordable genetic sequence repositories with the advances simplified and improved access to electronic information change over time and, within any given DNA Data Bank of Japan in a highly and reduced costs, which enabled inter-organizational time period, may vary by geographic successful collaboration to provide ac- collaborations to build and maintain large international location as well as by individual. In cess to the ever increasing amount of information resources and also aided outreach and education efforts the 21st century, "reliable" has the con- genetic data produced by institutions The demonstrated benefits of free access to electronic biomedical notation of permanently accessible and around the world [1]. The Consortium information encouraged the development of public policies that further increase the amount of information available. uninterrupted by disasters or emergen- provides a spectacular illustration of the Conclusions: Continuing rapid growth of publicly accessible cies. To an increasing number of value of standard electronic interchange electronic biomedical information presents tremendous opportunities people, "affordable" means free - at formats and high speed telecommuni- and challenges, including the need to ensure uninterrupted access least to them. cations. The NLM's National Center for during disasters or emergencies and to manage digital resources so Despite persistent unevenness, ac- Biotechnology Information (NCBI) they remain available for future generations. cess to biomedical information im- was instrumental in the development of proved steadily over the past 50 years the standards that now allow the three Keywords and dramatically over the past two repositories to exchange newly received Access to information, genetic databases, digital libraries, consumer decades. Improvements in access data every day, ensuring fast access to health information, clinical trials have been fueled by developments in key scientific information across the Geissbuhler A, Kulikowski C, editors. IMIA Yearbook of Medical computing and telecommunications, globe. Responsibility for management Informatics 2008. Methods Inf Med 2008; 47 Suppl 1:165-72 in informatics research, in inter-or- of GenBank was transferred to NCBI ganizational cooperation, and in pub- from the Los Alamos National Labo- lic policy. 2007 was a year of key ratory in October 1992. anniversaries and significant new Sequence data provided a compel- events in a story of continuing ling early example of the power of jour- progress. Here are some of the mile- nal editors to promote public deposit stones and challenges that occupied of scientific data, and of research the time and attention of the U.S. Na- funders to ensure that biomedical re- tional Library of Medicine over the search information is available in pub- past year. lic databases. By 1989, key journals

IMIA Yearbook of Medical Informatics 2008 166 Lindberg et al.

were requiring evidence of submission Secretary of Health and Human Ser- access. As users began to pay for their of sequence data to GenBank prior to vices, and private funders have joined own Internet connections for a variety publication of an article discussing a together to support Genome Wide As- of purposes, commercial telecommu- sequence [2]. A basic tenet of the sociation Studies, which link patients' nications services were no longer needed funders of the Human Genome Project, clinical data to their genomic data to to access MEDLINE, and NLM no launched in 1990, was that the data form a powerful new tool for identify- longer had a need to charge users for from all the international participants ing genetic and environmental factors their share of a large central telecom- should be pooled and made available that affect health, disease, and response munications bill. to researchers worldwide [3]. to therapy. Funding is contingent on the The Internet and the World Wide More recently the basic nucleotides resulting data being broadly available Web enabled NLM to make PubMed/ of the original Human Genome se- to the research community. Summary MEDLINE free, but the strong impe- quencing project have been indexed to data are publicly available in dbGaP tus for doing so came from those at- and complemented by corresponding (database of Genome and Phenome), tempting to provide information ser- (homologous) nucleotide sequences [4] another database developed by vices to disadvantaged communities, as from genetic sites on more than 100,000 NCBI. Researchers may request indi- well as from biomedical researchers in other species. All of these are directly vidual patient level data (also stored in relatively resource-rich environments. linked where possible to published re- dbGaP) under a carefully crafted data- In 1994, prior to broad availability of ports of studies that elucidate the sub- sharing plan [5] released in 2007. Clini- the World Wide Web, NLM used an structure of the genes and the proteins cal and genomic data from the monu- increase in its AIDS-related funding to produced. In many cases, these have mental Framingham Heart study be- make access to the AIDSLINE, now also been linked to the fine struc- came available to researchers in dbGaP AIDSDRUGS, and AIDSTRIALS, and ture of the actual proteins coded for by in October 2007. In addition to pro- DIRLINE databases free. This was in the genes. Together these data repre- viding exciting new opportunities for direct response to recommendations sent a vast amount of human biology, biomedical research, dbGaP is also an from community-based HIV/AIDS sup- most of which is not yet understood. important resource for studying clini- port organizations made at an NIH HIV/ For example, only two percent of the cal research protocols and identifying AIDS Information Services Conference human genes so far identified are known strategies for prospective alignment of [6] held in 1993. As an aid to the Hu- to code for protein production and clinical research variables with stan- man Genome project, NCBI began dis- hence might have a known function. dards for electronic health care data. tributing MEDLINE citations to ar- Opening these vast files of biological ticles containing sequence data on CD- data to able enquiring minds worldwide ROMs in 1991 and in 1994 provided speeds a more complete understanding free experimental online access via the of our species. Free MEDLINE and Public Internet to this subset of MEDLINE. The success of the Human Genome Access to Scientific Literature The value of free access to NLM's bib- Project amply demonstrated the scien- liographic data became obvious to the tific benefits of free access to pooled 2007 was also the 10th anniversary of entire spectrum of user populations - international research data, prompting free worldwide access to MEDLINE and to the U.S. Congress - as NLM the U.S. National Institutes of Health via PubMed, which - not incidentally - worked with the National Network of (NIH) and other international research is linked to GenBank, other scientific Libraries of Medicine in the U.S. to funders to invest in public data re- databanks, full-text articles available on improve information services to sources. For example, the NIH Molecu- publisher's websites and in the PubMed underserved health professionals [7]. lar Libraries project led to the NCBI's Central electronic archive, libraries' Use of personal computers and special- development of the PubChem database electronic and print collections, and to ized interface software, such as Grate- of small molecules and bioassay data consumer health information resources. ful Med® [8], made access to in 2004. PubChem includes data depos- NLM released an Internet-based inter- MEDLINE from offices and homes ited by companies and researchers from face to MEDLINE in 1996 and was able easier, but even the relatively modest 13 countries and is accessed by as many to eliminate its fees for searching fees charged for MEDLINE access by as 40,000 users every day. More re- MEDLINE and other databases in 1997 NLM, its International MEDLARS cently, NIH, the Office of the U.S. due to broad availability of Internet partners, and commercial database pro-

IMIA Yearbook of Medical Informatics 2008 167 Rising Expectations: Access to Biomedical Information

viders were prohibitive for many health puses. The development of societal in- ments with NLM that might (or might professionals serving disadvantaged terest in "open source", "open access" not) specify a delay between initial pub- populations in the U.S. and elsewhere and the public's right to electronic ac- lication of journal articles and their pub- around the world. The various cess to research results - and of research lic availability in PubMed Central. MEDLINE on CD-ROM products [9] funding policies that promote public Journals depositing their current con- produced by the private sector helped access to scientific articles - is a com- tents in PubMed Central could also elect to provide more affordable access plex story with many significant events to have their backfiles scanned and digi- throughout the world - given local tech- and fascinating characters. We refer tized by NLM for inclusion in the da- nical expertise and reliable electricity. readers to a recent book by Frances tabase. In 2004, the Wellcome Trust and Once PubMed/MEDLINE was free Groen [11] and to the web site of the U.K. Joint Information Systems via the World Wide Web, use immedi- SPARC ®, the Scholarly Publishing Committee provided substantial addi- ately increased ten fold. It has been and Academic Resources Coalition [12] tional funding for scanning and digi- climbing steadily ever since. Since - itself a key player in these develop- tizing the backfiles of selected British 1997, PubMed has been enhanced to ments - for the wider context in which journals for addition to PubMed Cen- include direct links from bibliographic broader public access to biomedical tral. The digitization of backfiles of citations to a range of scientific data, to journal articles has emerged. journals for PubMed Central is just one consumer health information, and to the In an environment increasingly re- example of a much broader interna- full text of articles on an expanding num- ceptive to significant change in schol- tional phenomenon. The Web has be- ber of publisher websites through its arly communication patterns, scientific come an important vehicle for making "LinkOut" feature. PubMed has also researchers - encouraged by the ben- newly digitized elements of the histori- been augmented to enable users to send efits of free Web access to molecular cal record of biomedicine and other electronic requests for articles to librar- biology data and MEDLINE citations fields readily available worldwide. This ies and to allow libraries to provide - began promoting the notion of an includes printed literature, rare books, customized "LinkOut" capabilities for electronic full-text pre-print archive for manuscripts, images, and moving pic- their direct user populations (e.g., fac- biomedicine, similar to the physics tures. At the other end of the spectrum, ulty and students in their universities) archive initiated by Paul Ginsparg at many new reports, policy statements, that facilitate access to the electronic (and Los Alamos National Laboratory in press releases, etc. on biomedical and print) journals in their collections [10]. 1991 [13]. In 1999, Harold Varmus, health topics are now published on the These features improved access to bio- then NIH Director, invited public com- Web. The result is that very recent "gray medical information, but also high- ment on a proposed electronic archive literature" is more accessible than at any lighted the fact that many PubMed users of both published papers and pre-pub- time in history, but perhaps also more were not able to view the electronic full- lication manuscripts to be built and in danger of disappearing tomorrow. text of most articles due to their lack of managed by NCBI and linked with As the PubMed Central archive grew, affiliation with an institution with the PubMed, GenBank, and other NLM there were other important efforts to necessary subscriptions or licenses. databases. The proposal generated con- promote international electronic access Few biomedical journal articles were siderable controversy among publish- to biomedical journals. Especially no- freely available on the Web in 1997. ers, editors, clinicians, and scientists table is the Health InterNetwork Access Research libraries - and the institutions [14,15] and also encouraged some bio- to Research Initiative (HINARI), they served - were faced with continu- medical publishers to make more ar- which provides free or very low cost ing journal subscription price increases ticles freely available on their own online access to journals in biomedical they could ill afford - not to mention a websites. In response to feedback re- and related social sciences to local, non- confusing array of licensing arrange- garding the potential dangers of profit organizations in developing ments for electronic journals, some with unreviewed clinical research papers, countries [16]. Organized under the aus- restrictions that seemed to counteract NIH's PubMed Central archive was re- pices of the World Health Organization many of the long anticipated advantages leased in 2000 with an initial scope lim- (WHO), HINARI was launched in 2002 of electronic publishing. Limits on ac- ited to final published versions of articles with about 1,500 journals published by cess to and use of articles generated by voluntarily deposited by interested jour- Blackwell, Elsevier Science, the their own faculty and students aroused nal publishers. Then, as now, participat- Harcourt Worldwide STM Group, particular frustration on university cam- ing publishers entered into formal agree- Wolters Kluwer International Health &

IMIA Yearbook of Medical Informatics 2008 168 Lindberg et al.

Science, Springer Verlag, and John NLM DTD as the standard for digital submissions of such articles through all Wiley. Twenty-two additional publish- preservation of electronic journals. It mechanisms (including routine pub- ers joined later that year, bringing the is now a de facto international standard. lisher deposit of journals in PubMed total number of journals to over 2000. PubMed Central was an enabler for Central) never reached 25 percent of Organizations in developing countries biomedical research funders wishing to relevant papers. In the meantime, the apply for access through the WHO. ensure that articles arising from sup- mandatory policies of other research Administrative and technical problems ported research were readily available funders had no noticeable negative ef- slowed start-up, and there have been to researchers, students, and the gen- fect on biomedical publishers. Dissat- recent reports of reduced access to im- eral public. Encouraged by strong in- isfied with the rate of progress on pub- portant journals previously available terest in the U.S. Congress, in 2004 NIH lic access to NIH-funded articles, the [17]. Nevertheless, HINARI has im- Director Elias Zerhouni issued a pro- U.S. Congress included a mandatory proved access to biomedical literature posed policy for building a comprehen- public access provision in the Appro- in many countries. NLM worked with sive archive of NIH-funded research to priations Act for fiscal 2008, which HINARI's technical management to enable more effective and efficient re- became law on December 26, 2007. On establish it as a "LinkOut" provider so search portfolio management and to January 11, 2008, the NIH issued that HINARI members can connect di- ensure broad public access to articles implementation guidance for manda- rectly to full-text articles from PubMed. arising from NIH-funded research. The tory submissions which becomes effec- As the number of electronic journals draft policy called for mandatory sub- tive on April 7, 2008 [19]. increased so did interest in the devel- mission to PubMed Central of peer-re- NLM computer systems are now an- opment of robust standards for them. viewed final manuscripts reporting swering close to two billion inquiries Publishers sought standard or recom- NIH-funded research for public release per year. Biomedical knowledge arises mended formats that would ease their within 6 months of publication. In re- worldwide. Even in the first 1879 vol- transition to electronic publishing. Li- sponse to strong reactions from both ume of Index Medicus, the majority of braries concerned with permanent ac- commercial and society publishers, who citations were to non-U.S. articles. Al- cess to electronic content knew that predicted dire consequences for the lied computer facilities outside the U.S. standard formats would simplify the sustainability of scholarly communica- clearly are now needed to provide local enormous job of digital preservation for tion and of scientific associations, the access and back-up for PubMed Cen- this category of material. Given its ex- final policy effective in May 2005 tral holdings. In response to inquiries perience with ingesting electronic jour- strongly encouraged voluntary submis- from a number of countries, the NCBI nals from multiple sources and convert- sion of the manuscripts for public re- developed PubMed Central Interna- ing them to a single tagged format for lease within 12 months of publication. tional (PMCi), a lighter weight version PubMed Central, the NCBI had both NCBI built an efficient individual of the system that depends on the NLM experience and strong motivation to manuscript submission system to imple- standard DTD. Once again, the develop a standard format that would ment the NIH policy. The system was Wellcome Trust took a leadership role accommodate all life sciences journals. also used to implement a mandatory 6- and set up a partnership of public and As NCBI was developing the format, month policy established by the private research funders to establish the Harvard University Libraries, with Wellcome trust and similar research UKPMC in January 2007 as the first funding from the Mellon Foundation, policies by other funders in the United operational PubMed Central Interna- provided additional resources for analy- Kingdom and elsewhere. NCBI also set tional site. UKPMC currently serves as sis of journals so the format would cover up batch pipelines for publishers who a mirror site for the majority of the all disciplines. The first version of the wished to submit final manuscripts content in NIH's PubMed Central site NLM Journal Archiving and Inter- (which required final review by authors and also ingests manuscripts supported change DTD Suite [18] appeared in after tagging for inclusion in PubMed by UK biomedical research funders. 2003. An international Working Group Central) or final published papers on Institutions in the Europe, the Far East, advises on necessary changes and ex- behalf of NIH-funded authors. The and Africa are also considering setting tensions to the Suite, which now cov- voluntary NIH public access policy did up PubMed Central International sites. ers books as well as journal articles. In not achieve its desired goal. Only 5 Just 10 years after MEDLINE be- 2006, the U.S. Library of Congress and percent of applicable articles were sub- came free, 46 percent of the 17.8 mil- the British Library jointly endorsed the mitted by NIH-funded authors, and lion bibliographic citations in PubMed

IMIA Yearbook of Medical Informatics 2008 169 Rising Expectations: Access to Biomedical Information

are linked to electronic full-text articles. [20], with web information on 22 fre- were no penalties for non-compliance For the 4.1 million articles published quently searched disease topics from with registration under FDAMA, and from 2000 on, the percentage linked to NIH and other authoritative sources, less than 10,000 trials were registered. full-text is 84 percent. The percentages carefully organized and evaluated by In 2004, the power of journal edi- linked to free full text are much lower: medical librarians. With no advertising tors to compel submission of research 12 percent for the entire file and 19 and no registration requirements, today data was once again demonstrated when percent for 2000 on - but all of these MedlinePlus has more than 700 health the International Committee of Medi- numbers are climbing gradually. Ret- topics in both English and Spanish, as cal Journal Editors (ICMJE) announced rospective digitization of journals and well as health news, interactive tutori- that effective with trials beginning on of pre-MEDLARS indexing data (now als, dictionaries, an illustrated encyclo- July 1, 2005 or later they would refuse back through 1949) has greatly en- pedia, drug and dietary supplement in- to publish the results of clinical trials hanced access to historical literature. formation, videos of surgical operations, that were not registered in a public trial Just 7 years after it was established, and specific links to NLM databases, registry prior to the enrollment of the PubMed Central contains more than 1.4 such as PubMed, ClinicalTrials.gov, first patient [22]. Ongoing trials were million articles. More than 3 million toxicological resources, and Genetics given until September 13, 2005 to reg- users retrieve more than 12 million Home Reference. The "Go Local" fea- ister. At the time of the ICMJE an- copies of articles from it every month. ture connects authoritative health infor- nouncement, ClinicalTrials.gov was the mation in MedlinePlus to sites that pro- only public registry that met their re- vide information about health services quirements. In response to the ICMJE available in many localities within the action, NLM opened up the database Consumer Health Informati- U.S. Teams of librarians at NLM and at to international trials without a U.S. site. on and Public Access to Go Local sites review content regularly The ICMJE action was prompted by Clinical Trials Data to ensure its continued currency and ap- some celebrated cases in which trial propriateness. MedlinePlus delivers 250 results were incompletely reported in With the birth of the Web browser in million page views to close to 100 mil- journal articles, with the result that se- 1993, the Internet became an obvious lion users each quarter. About 42 per- rious adverse effects affecting some vehicle for improving access to health cent of the use is from outside the U.S. populations were essentially concealed information written for patients, their The development of ClinicalTrials.gov, from the public. Journal editors re- families, and the general public. Inter- [21] now an international registry of quired trial registration so they could esting health sites immediately ap- clinical studies, was precipitated by an- compare results reported in submitted peared, e.g., drkoop.com, but sustain- other event in 1997: the passage of the papers to registry entries to detect in- able business models lagged behind. Food and Drug Administration (FDA) complete reporting, discrepancies in Internet users did not expect to pay for Modernization Act. This law instructed outcome measures, etc. The ICMJE information, and Web advertising had the U.S. Secretary of Health and Hu- policy prompted a sharp increase in the yet to take off. NLM's entry into the man Services to establish a registry of number of trials registered in field of Web-based health information trials of FDA-regulated drugs intended ClinicalTrials.gov [23] and the num- for the public was another development to treat "serious or life threatening con- ber of organizations registering, both prompted by free MEDLINE access. ditions" - in consultation with the ad- inside and outside the U.S., making the Once MEDLINE was free, large num- ministrator of FDA and the directors database more valuable to the public, bers of the lay public began to use it, of NIH, NLM, and the Centers for Dis- journal editors, and those engaged in even though it was scarcely the best ease Control and Prevention. The pur- systematic review of evidence. Reflect- place to attain the basic understanding pose of the database was to expand the ing the strong international interest in of health and disease topics that many U.S. public's access to ongoing trials registration, in 2005 the World Health of them were obviously seeking. The that might be relevant to them. NLM Organization (WHO) initiated a project doubling of the NIH budget gave NLM was assigned responsibility for the da- to develop standards for international the opportunity to develop new services tabase, which was launched in 2000 trial registries [24]. This effort was wel- targeted toward the general public. In with NIH-funded trials and later ex- come - and ClinicalTrials.gov includes 1998, NLM released the MedlinePlus panded to include other federally- the WHO standard elements - but consumer health information website funded trials and industry trials. There WHO's expressed interest in the estab-

IMIA Yearbook of Medical Informatics 2008 170 Lindberg et al.

lishment of national clinical trial reg- tive use of molecular biology and ge- the chances of finding the most relevant istries was less helpful. A careful col- nomic data, they are a pre-requisite for information quickly. Linking informa- laboration among a few large regional serious use of high resolution image tion intelligently from disparate sources registries - following the model of the data. NLM began the Visible Human and delivering the right information in International Nucleotide Sequence Con- project [26] to produce a public domain time to improve decision-making for a sortium - would be a more cost-effec- three-dimensional database of cryo- wide range of users are therefore per- tive and sustainable approach that would graphic, magnetic resonance imaging, petual goals - with informatics research reduce duplicate registrations of mul- and computed tomography images of a challenges that change as new sources tinational trials. complete human male and female at sub- of information and new technologies Ten years after action by the U.S. millimeter resolution before desktop become available. Virtually every in- Congress prompted development of the computers were capable of handling formation resource described in this ClinicalTrials.gov, the recent FDA files of that magnitude. By the time the article makes use of the Unified Medi- Amendments Act of 2007 has expanded Visible Human data sets became avail- cal Language System (UMLS) [29] mandatory registration to include ad- able for FTP download over the Internet resources in some way to compensate ditional types of trials (devices as well and on CD-ROMs in 1994 and 1995, for variations in the ways concepts are as drugs) and more data elements (es- many researchers and system develop- expressed; most of them are richly sentially all those required by the ICMJE ers had local systems capable of han- linked to other information sources (in- guidelines), mandated deposit of unpub- dling them. Five years ago, NLM cluding some patient records) to help lished results data in a public database, funded a group of universities and com- users discover and connect to the in- and imposed significant penalties for panies to jointly develop and test the formation most relevant to their inquir- non-compliance. NLM is now engaged Insight Toolkit (ITk) [27], an open ies; and many are frequent targets of in expanding ClinicalTrials.gov to meet source software toolkit for segmenta- natural language processing, data-min- these challenging new requirements. tion and registration of tomographic ing, and automated analysis efforts. Expanded registration was effective on image data sets, including those in the Although significant advances have December 26, 2007, just 90 days after Visible Human data sets. The goal was been made, we are a long way from the new law was passed. The new man- to create a dynamic, public domain and systems that behave as if they really date prompted another significant surge extensible toolkit usable in imaging re- know what users want or need - and in submissions to ClinicalTrials.gov search and application development then give it to them quickly. both from the U.S. and from other throughout the world. Public availabil- We are also at the dawn of a new countries, including thousands probably ity of the datasets and the toolkit have form of electronic publication that will not subject to the new law. The data- had a major impact on imaging research carry special access, use, and preserva- base currently contains more than worldwide and led to significant appli- tion challenges. Interactive publications, 51,000 trials from 153 countries. Pub- cations in radiological imaging, edu- while mostly a future development, lic access to clinical trial results that cational simulations, and surgical plan- have already been sighted at NLM [30]. have not been peer-reviewed for pub- ning [28]. In an analysis done at the Library in lication is uncharted territory - both on 2005, about 2 percent of the articles in a technical and public policy front [25]. sample of likely journals indexed in Considerable experimentation is likely Ongoing Challenges MEDLINE contained electronic ele- to be required to achieve presentation ments designed to respond to on-line methods that provide appropriate con- The combination of the Internet, user actions and the number of such text for clinicians and the public. Google®, other search engines, and articles is increasing. Some articles in- ever-expanding stores of free informa- clude detailed depictions of surgical tion in electronic form has improved findings and procedures, even demon- access to biomedical knowledge immea- strations of the underlying embryologi- Open Access to Image Data surably since the first Web browser was cal abnormalities. In other cases the and Software Tools released less than 15 years ago. Unfor- articles include "the data behind the tunately, increasing the amount of elec- tables". What potential, if any, do such Just as high speed computing and tele- tronic biomedical information that is publications have for speeding under- communications are essential to effec- readily available can actually decrease standing of new knowledge and pro-

IMIA Yearbook of Medical Informatics 2008 171 Rising Expectations: Access to Biomedical Information

longing its effective retention? NLM electronic health records that can con- control, organization, and preservation, has entered into partnership with the nect effectively to each other and to plus the responsibility to provide up to Optical Society of America to determine electronic biomedical knowledge, date access software and hosting. Those the most effective examples of interac- whether in routine health care or in the universities that do not seek or accept tive publication, their costs, and possible aftermath of disasters. NLM repre- such a mandate will perhaps limit their means by which NLM could in the fu- sented the U.S. in the nine-country ne- scope to arranging access to informa- ture preserve such digital publications. gotiations that led to the formation of tion for their faculty and students and No information is useful if it is not the International Health Terminology possibly to storage and preservation of accessible when needed. Natural and Standards Development Organization information generated within their in- man made disasters in the past decade (IHTSDO) in 2007 and its acquisition stitutions. have repeatedly shown seemingly silly, of the SNOMED CT clinical terminol- Many organizations are currently but important faults in disaster infor- ogy from the College of American Pa- heavily dependent upon the NLM and mation management that are easily un- thologists [31]. This may prove to be other governmental institutions around derstandable by the public as well as an important step toward useful inter- the world for maintenance of public by medical informaticians, e.g., police national standardization of health data. scientific data bases and other biomedi- and fire service telecommunication Electronic health records are an old cal information resources. Although he equipment broadcasting on incompat- idea with new relevance to disaster in- sees biomedicine as a potential excep- ible frequencies, huge numbers of formation management. Newer ideas tion, Clifford Lynch, Executive Direc- evacuees without knowledge (let alone such as implantable electronic identity tor of the Coalition for Networked electronic records) of their medications. devices (such as the RFIDs used in Informatino has stated that “ultimate In addition, the Katrina hurricane di- pets), while not without ethical issues, responsibility for stewardship in many saster in Louisiana/Mississippi demon- are under serious consideration in the disciplines, after the vagaries of gov- strated the difficulty in helping thou- US [32]. If adopted, national registries ernment funding over time are consid- sands of old, feeble residents of nursing designed to preserve personal health ered, will have to rest with higher edu- homes - evacuated to public shelters - identities would provide at least one cation rather than the funders of schol- who could not identify themselves. emergency path to critical health infor- arly and scientific research.” [34] This Possible solutions to these problems mation. The National Network of Li- is a very important question. From are under investigation within NLM's braries of Medicine is testing the ex- NLM's viewpoint, intellectual fervor Lister Hill Center and the Library's pansion of MedlinePlus Go Local cov- and creativity still abound in universi- Division of Toxicology and Environ- erage to include resources required in ties and in the biotechnology, biomedi- mental Health, and by participating li- disasters and emergencies, as well as cal engineering and pharmaceutical braries in the National Network of Li- various approaches to integrating librar- industries, too, but we cannot urge so- braries of Medicine. As demonstrated ies into community disaster prepared- cietal reliance upon these sectors to pro- by the Department of Veterans Affairs ness and response efforts. vide permanent reliable public access system and the rapid pooling of medi- As articulated in the NLM Board of to quality assured - let alone free - bio- cation data from pharmacy chains dur- Regents Long Range Plan for 2006- medical knowledge. This has seemed a ing the Katrina disaster, electronic 2016 [33], the Library's first responsi- proper function to be assayed by gov- medical records can be used to help bility is to ensure effective uninter- ernments. Lack of monopoly on wis- displaced persons during large-scale rupted access to its own heavily used dom by any segment of society sug- disasters. Personal health records, electronic sources of biomedical infor- gests that to some extent parallel ef- whether portable or remotely acces- mation both in times of disaster or forts continue to make sense. Threats sible, could be similarly beneficial. emergency and in response to chang- of physical and political disasters sug- NLM is exploring approaches to making technologies and user needs. Orga- gest that duplicate stores of key scien- ing it easy for individuals who create nizations, including universities, which tific information on two or three con- personal health records to incorporate have or seek a major mandate to build tinents may continue to be prudent and standard terminology and identifiers in and maintain public repositories of practical - just as they proved essential them. The Library continues to support knowledge in the digital age must rec- to the preservation of knowledge dur- broad availability of standard clinical ognize and plan for the substantial ing the wars and disasters of the 20th terminologies as one prerequisite for added costs of data acquisition, quality and many previous centuries.

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12. SPARC, The Scholarly Publishing & Academic 25. Zarin DA, Ide NC, Tse T, Harlan WR, West JC, References Resources Coalition [Internet]. Washington, D.C.: Lindberg DA. Issues in the registration of clinical 1. Public Collections of DNA and RNA Sequence SPARC, c2007 [cited 2008 Feb 27]. Available from: trials. JAMA 2007 May 16;297(19):2112-20. Reach 100 Gigabases [press release on the Internet]. http://www.arl.org/sparc/. 26. Ackerman MJ. The Visible Human Project. J Bethesda, MD: National Library of Medicine, 2005 13. Ginsparg P. As we may read. J Neurosci 2006 Sep Biocommun 1991;18(2):14. Aug 22 [cited 2008 Feb 27]. Available from: http:/ 20;26(38):9606-8. 27. Yoo TS, Metaxas DN. Open science-combining open /www.nlm.nih.gov/news/press_releases/ 14. Fox R. E-biomed. J R Soc Med 1999 Sep;92 data and open source software: medical image analysis dna_rna_100_gig.html. (9):441-2. with the Insight Toolkit. Med Image Anal 2005 2. Dawid IB. Submission of sequences. Proc Natl 15. Relman AS. 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IMIA Yearbook of Medical Informatics 2008