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Minutes of the Board of Regents, January 26-27, 1999

DEPARTMENT OF HEALTH AND HUMAN SERVICES

NATIONAL INSTITUTES OF HEALTH

NATIONAL LIBRARY OF MEDICINE

MINUTES OF THE BOARD OF REGENTS

January 26-27, 1999

The 120th meeting of the Board of Regents was convened on January 26, 1999, at 9:10 a.m. in the NLM Board Room, Building 38, National Library of Medicine (NLM), National Institutes of Health (NIH), Bethesda, Maryland. The meeting was open to the public from 9:10 a.m. to 4:00 p.m., followed by the closed session for consideration of grant applications until 4:15 p.m. On January 27, the meeting was reconvened and open to the public from 9:00 a.m. until adjournment at 12:10 p.m. Dr. Tenley Albright presided as Chair.

MEMBERS PRESENT

Dr. Tenley Albright, Chair

Dr. Jordan Baruch

Dr. Enriqueta Bond

Dr. Raymond Fonseca

Dr. Henry Foster

Dr. Sherrilynne Fuller

Ms. Michele Klein

Dr. Joshua Lederberg

Dr. Herbert Pardes

EX OFFICIO AND ALTERNATE MEMBERS PRESENT

Dr. David Satcher

Rear Admiral Kenneth Moritsugu

Ms. Pamela Q.J. Andre

Dr. James A. Zimble

Ms. Gail Graham, attending for Ms. Wendy Carter (alternate for Dr. Kenneth Kizer)

Colonel Kristen Raines, representing Lt. Gen. Ronald Blanck

Brigadier General Klaus O. Schafer, representing Lt. Gen. Charles Roadman

Captain William Wurzel, representing Vice Admiral Richard Nelson

CONSULTANTS TO THE BOR PRESENT

Dr. Marion Ball, First Consulting Group

Dr. Steven Phillips, Iowa Heart Center-Mercy Hospital Medical Center

Dr. Kenneth Walker, Emory University School of Medicine

MEMBERS OF THE PUBLIC PRESENT

Mr. Neil Rambo, University of Washington

Dr. Latanya Sweeney, Carnegie Mellon University

Mr. Keith Krueger, Friends of the National Library of Medicine

FEDERAL EMPLOYEES PRESENT

Dr. Donald A.B. Lindberg, Director, NLM

Mr. Kent A. Smith, Deputy Director, NLM

Dr. Wendy Baldwin, Associate Director for Extramural Programs, NIH

Dr. Richa Agarwala, National Center for Biotechnology Information, NLM

Ms. Suzanne Aubuchon, Office of the Director, NLM

Mr. Rick Banvard, Lister Hill Center for Biomedical Communications, NLM

Dr. David Benson, National Center for Biotechnology Information, NLM

Ms. Susan Buyer, Office for Health Information Programs, NLM

Ms. Marj Cahn, Division of Library Operations, NLM

Ms. Penny Colbert, Information Resources Management Branch, NICHD

Ms. Patricia Carson, Office of the Director, NLM

Dr. Milton Corn, Associate Director for Extramural Programs, NLM

Ms. Laurie DuQuette, Technical Services Division, LO/NLM

Dr. Patrick Durand, National Center for Biotechnology Information, NLM

Ms. Kathleen Gardner, Office of Public Communications and Public Liaison, NLM

Dr. Nikolai Grishin, National Center for Biotechnology Information, NLM

Ms. Carol Haberman, Division of Library Operations, NLM

Ms. Karen Hajarian, Acting Coordinator, NLM Associates Program

Ms. Kaye Hayes-Waller, Office of the Surgeon General, PHS

Ms. Betsy Humphreys, Assistant Director for Health Services Research, LO/ NLM

Mr. Joseph Hutchins, Office of Computer and Communications Systems, NLM

Dr. Donald Jenkins, Office of High Performance Computing and Communications, NLM

Ms. Bonnie Kaps, Committee Management Office, NLM

Dr. Lawrence Kingsland III, Assistant Director for Health Services Research Information, NLM

Ms. Sue Levine, Office of Financial Management, NLM

Dr. David Lipman, Director, National Center for Biotechnology Information, NLM

Ms. Becky Lyon, National Network Office, LO/NLM

Ms. Dianne McCutcheon, Office of Computer and Communications Systems, NLM

Dr. Alvin Marcelo, Lister Hill National Center for Biomedical Communications, NLM

Ms. Jennifer Marill, Library Operations, NLM

Dr. Alexa McCray, Director, Lister Hill National Center for Biomedical Communications, NLM

Mr. Robert Mehnert, Office of Public Communications and Public Liaison, NLM

Mr. Frank Newman, Division of Specialized Information Services, NLM

Dr. Sharee Pepper, Office of Extramural Programs, NLM

Mr. Donald Poppke, Executive Officer NLM

Ms. Nancy Roderer, Division of Library Operations, NLM

Ms. Julia Royall, Office for Health Information Programs, NLM

Ms. Alberta Sandel, Office of the Director, NLM

Dr. Alejandro Schaffer, National Center for Biotechnology Information, NLM

Dr. Hagit Shatkay-Reshef, National Center for Biotechnology Information, NLM

Dr. Stephen Sherry, National Center for Biotechnology Information, NLM

Dr. Hugues Sicotte, National Center for Biotechnology Information, NLM

Dr. Melvin Spann, Associate Director for Specialized Information Services, NLM

Mr. Roy Standing, Acting Director, Office of Computer & Communications Systems, NLM

Dr. Steven Sullivan, National Center for Biotechnology Information, NLM

Dr. Paul Theerman, History of Medicine Division, NLM

Dr. Fred Wood, Office for Health Information Programs, NLM

Dr. Terry Yoo, Office of High Performance Computing and Communications, NLM

I. OPENING REMARKS

Board Chair Dr. Tenley Albright welcomed the Regents and guests to the 120th meeting of the Board of Regents of the National Library of Medicine. She welcomed especially newly appointed Regent Dr. Henry Foster and new ex-officio member, Surgeon General Dr. David Satcher, U.S. Public Health Service. Dr. Albright also welcomed PHS Deputy Surgeon General, Dr. Kenneth P. Moritsugu, who will be Dr. Satcher's alternate representative on the Board. Mr. Neil Rambo, Associate Director of the Regional Medical Library at the University of Washington, was welcomed, as were consultants Dr. Marion Ball, Dr. Steven Phillips, and Dr. Kenneth Walker.

II. REMARKS BY THE PHS SURGEON GENERAL

Dr. David Satcher (who also has the title HHS Assistant Secretary for Health) noted that the Public Health Service is celebrating its bicentennial in 1998-99. He briefly described the history of the organization, which began in 1798 as the Marine Hospital Service, saying that Surgeons General, in their pursuit of the public health, have frequently been viewed as controversial. Dr. Satcher named his three major priorities: (1) a balanced community health system that involves health promotion, disease prevention, early diagnosis, universal access to care, and balanced mental health care; (2) a global approach to health (especially concerning infectious diseases, blood supplies, and food); and (3) a commitment to eliminate the disparities in health on the basis of race and ethnicity.

Following these remarks, Dr. Herbert Pardes applauded the Surgeon General's emphasis on mental health; Dr. Satcher replied by noting that a Surgeon General's report on mental health is now being prepared and that there is also an upcoming White House Conference on Mental Health. Dr. Joshua Lederberg asked about how society is going to cope with costs when health care is set outside the marketplace and considered an entitlement. The Surgeon General said that the first step is to know what we really want--to define a balanced health care system that includes elements such as research, health promotion and disease prevention, early diagnosis, and universal access to quality care. As a nation we have to come to a consensus about what we want to support. The dissemination of biomedical information is also an important component of the mix; the National Library of Medicine has been exemplary in this. Pamela André asked about ongoing collaborations between the medical and agricultural communities to help integrate diet and food considerations into health care. Dr. Satcher said that there are a number of such collaborations, including one he is co-chairing this very afternoon: a meeting of the School Health Committee which has high-level representatives from several agencies, including the Department of Agriculture, at which nutrition and other school health issues will be discussed. Dr. Henry Foster commented that one of the most effective, and easiest, methods of preventive medicine is prenatal care; this should be one of the very highest priorities. Dr. Satcher agreed, and said that the Child Health Insurance Act that is now being implemented should assist in this regard.

III. REPORT FROM THE NIH DIRECTOR'S OFFICE

Dr. Wendy Baldwin, NIH Deputy Director for Extramural Research, said that the 1999 Omnibus Bill has in it a small provision that directs the Office of Management and Budget to extend the provisions of the Freedom of Information Act to include data produced by NIH grantees. A bill has been introduced to repeal the provision, but as of now it is law. The OMB "notice of proposed rulemaking" will soon be published and a 60-day comment period will begin. The law contains no definitions, such as what is "data"; a broad interpretation would include, for example, population studies, clinical trials, laboratory notebooks, and videotaped family interactions. The timing of the release of data also has to be considered: after presentation? after publishing? The law covers data produced in whole or in part with Federal support. This makes problematic those projects that are collaborative with other (nonfederal) funding organizations. It is not clear what the longevity of the right of access would be. Forever? Any fees collected for reproducing data would not go to the NIH or the grantee, but to the U.S. Treasury. Dr. Baldwin said that although a reasonable data-sharing policy is certainly needed, the new law presents a number of problems. It will be important for the scientific community to respond to the OMB request for comments. Dr. Lindberg commented that the issues this law presents are connected to the need for national legislation dealing with the need for patient data privacy.

IV. CONSIDERATION OF MINUTES OF PREVIOUS MEETING

The Regents approved without change the minutes of the September 24-25, 1998, meeting.

V. FUTURE BOARD MEETINGS

The Board of Regents will meet next on May 4-5, 1999. Next fall's meeting will be

September 28-29. The proposed date of January 25-26, 2000, was accepted for next winter's meeting.

VI. REPORT OF THE NLM DIRECTOR

Dr. Lindberg was pleased to announce that on March 9, at the National Academy of Sciences, Research!America will present their research advocacy award to Dr. Tenley Albright. The NLM Director noted that the Library's budget went from $161 million in FY 1998 to over $181 million in FY 1999, a phenomenal increase. He said that the bulk of the increase ($8.3 million) will go for projects related to High Performance Computing and Communications. Lesser amounts are earmarked for genetics information, consumer health efforts, basic library services, and AIDS information services. The President's FY 2000 budget cannot yet be discussed; Dr. Lindberg will testify at budget hearings in February. The Director mentioned a recent announcement on Federal support for information technology, and he asked Dr. Fuller to provide details. She said that the President's Information Technology Advisory Committee (of which she is a member) has released a report recommending (1) more investment in long-term information technology research, (2) support for advanced computing for science, engineering, and the nation, and (3) research on the economic and social implications of the information revolution and the need to train the workforce to participate. The announcement said that the Administration was proposing $366 million for

FY 2000 to fund these programs; the lead agency will be the National Science Foundation but the funds will go to several agencies, including NIH. In the area of personnel, Dr. Lindberg called on NLM officials to introduce new senior staff to the Regents:

Ms. Betsy Humphreys, Library Operations, introduced Jennifer Marill (Senior Systems Librarian in the Public Services Division), Nancy Roderer (Library Associate Program Coordinator), and

Dr. Paul H. Theerman (head of nonbook special collections in the History of Medicine Division).

Dr. Alexa McCray, Lister Hill Center, introduced Dr. Donald P. Jenkins and Dr. Terry S. Yoo, both of the Office of High Performance Computing and Communications, and Dr. Alvin B. Marcelo, a Visiting Research Fellow from the University of the Philippines.

Dr. Melvin Spann, Division of Specialized Information Services, introduced computer specialist Frank Newman.

Dr. David Lipman, National Center for Biotechnology Information, introduced Dr. Steven A. Sullivan and Dr. Hagit Shatkay-Reshef (both Postdoctoral IRTAs), Dr. Nikolai V. Grishin (Research Fellow, Computational Biology Branch), three Staff Scientists in the Information Engineering Branch (Dr. Hugues Sicotte, Dr. Richa Agarwala, and Dr. Stephen T. Sherry), Dr. Patrick Durand (Visiting Fellow from France in the Information Engineering Branch), and Dr. Alejandro A. Schaffer (Senior Computer Scientist in the Computational Biology Branch).

Dr. Lindberg said that in October and November 1998, NLM hosted "Reverse Site Visits" of representatives of 14 of the 19 multi-year telemedicine projects that NLM funded in October 1996. A brief description of each project was provided to the Board. Another recent gathering at NLM was the Second Visible Human Conference on October 1-2. About 150 people attended, including a number of licensees of the data who shared their experiences. (The Regents were shown several brief video clips of Visible Human applications.) The new Director of the National Institute of Dental and Craniofacial Research spoke at the conference about a new Visible Human-based initiative in head/neck anatomy being sponsored by the NIDR and the NLM. Dr. Lindberg also reported on a retreat of 37 NLM senior staff in December at which the Library's role in providing information for the general public was the main topic. There was an overwhelming consensus in favor of the NLM assuming a responsibility in this area; as a statement of goals, a strategy, and an organizational structure to accomplish this are articulated they will be brought before the Board. The NLM Director noted that the NIH has formed a Council of Public Representatives that will hold its first meeting this spring. The Council was formed by the NIH Director as one response to an Institute of Medicine study recommending that NIH improve how it sets priorities by soliciting input from more sources. Another item reported by Dr. Lindberg was NLM's recent awarding of 24 contracts to medical institutions and companies to develop innovative projects involving the use of Next Generation Internet technology. A brief description of each project was in material provided to the Board. The last topic discussed by Dr. Lindberg was the question of physical facilities and space constraints. The backup role of the NLM as the world's "court of last resort" for health science literature makes it essential that the Library's collections be well housed. When Dr. Lindberg came to NLM in 1984, he was told that the space available to house the books and journals was adequate until 2030. In fact, for a variety of reasons, that time frame has been reduced to about 2003. The growth of the literature itself is one driving force for the need for more space. For example, the average number of articles per journal title has increased over the past three decades from 65 per year to more than 125. Another contributing factor is the space needed for rapidly expanding NLM programs, including the National Center for Biotechnology Information, whose staff are encroaching on space originally allocated for the collection. Dr. Lindberg illustrated this by projecting a series of schematic floor plans of the present facility. If we do nothing, we will run out of space in 2003; if we install more compact shelving and move people around, that date can be extended to 2008. A facilities consultant has been engaged to survey the NLM space situation and to make recommendations.

VII. UPDATE: NATIONAL CENTER FOR BIOTECHNOLOGY INFORMATION

Dr. David Lipman said that NCBI growth is being driven by greatly increased usage of the NCBI databases, the rising number of users, greater intensity of use, and the size and kind of datasets involved. One hundred thousand different sites are tapping in every day to the NCBI Web site, representing 4.5 million hits (double last year's usage). This pattern of doubling is true for the sequence databases, OMIM, and for PubMed (MEDLINE) usage. Dr. Lipman projected several graphs that demonstrated the rapidly increasing workloads. DNA sequence data, proteins, and 3D structure databases are all growing at an exponential rate. GenBank at present has 3 million sequence entries and 2 billion bases. In addition to maintaining these databases and services, NCBI staff continue basic research and training functions. It is inevitable that all this growth requires more staff and more space, he said. Dr. Lipman then described a new opportunity that would link the MEDLINE/PubMed user with online textbook information to provide additional background concepts. The Molecular Biology of the Cell by Bruce Alberts and others is the first such online textbook to be integrated in the test system. The textbook is being put online along with sophisticated keyword analysis software to link up concepts in MEDLINE records. Dr. Lipman described how NCBI experts are working with a substantial MEDLINE subset to accomplish this and he showed an example of how the system would work. There would be no charge for the MEDLINE user to link with textbook information, however the user would be limited to just that information pertinent to the retrieved MEDLINE record; the user would not be able to move around within the textbook. The next textbook to be worked on is about retroviruses; other medical textbooks are also being looked at. Textbook publishers are excited about this development because it has the potential of stimulating interest in and sales of the textbooks. Dr. Lipman said that with sequencing becoming less expensive, we will see more model organisms being sequenced. For certain diseases or physiological processes we may decide to study different organisms. Dr. Lederberg commented at this point that "comparative genomics" - the examination of sequence data from a variety of different organisms--has totally transformed the meaning of the Human Genome Project in an extraordinarily fruitful way. As an example, Dr. Lipman said, there is incredible potential in sequencing the genome of pathogens to find new targets for vaccine and antibiotics. The NCBI Director briefed the Board on the Cancer Genome Anatomy Project, a collaboration between NLM and the National Cancer Institute. NCBI has provided the informatics and computational expertise for the project. Using colon cancer as an example, he used the Web to demonstrate how CGAP can be used to see the gene expression of normal cells, various types of cancers, and cells that are beginning the tumor process. Dr. Lipman answered a question from Dr. Kenneth Walker about how the system can be used in designing drugs.

Dr. Joshua Lederberg chaired a January 19 meeting of the Board's Research and Development Subcommittee that reviewed the intramural research programs of the NCBI. He reported that the Subcommittee discussed the problems of space for the NLM staff (which Dr. Lindberg referred to earlier), and the Subcommittee recommends to the Board a resolution that calls for a look at the issues pertaining to this problem. Dr. Lindberg asked the Board to consider the resolution and perhaps act on it after lunch. NLM staff would then report at the next meeting about progress in resolving the problem. After lunch, the resolution was considered and the Board asked that several changes be made to intensify the sense of urgency they feel. They will then review and act on the resolution tomorrow.

VIII. CLINICAL TRIALS DATABASE

Dr. Alexa McCray, Director of the Lister Hill National Center for Biomedical Communications, reviewed for the Regents how the NLM came to be responsible for overseeing the development of a database of clinical trials. The project has its origin in the 1997 FDA Modernization Act, which requires the HHS Secretary, acting through the NIH Director, to establish a database of information on clinical trials, whether federally or privately funded, for experimental treatments for serious or life-threatening diseases and conditions. The primary users of the database will be patients and patients' families. The database should contain readily understood descriptions of the purpose of the experimental drug, the eligibility criteria, the location of the trial, and a point of contact for those who might wish to participate. A toll-free telephone number to disseminate this information is also mandated. In addition, the Secretary is required to report to Congress within two years on the feasibility of including device investigations in the database. Dr. McCray said that NLM was named as the institutional home of the Clinical Trials Database in September 1998. This is an excellent opportunity for NLM to create an important database and put it into the context of other work the Library is carrying out, such as providing information for the general public. There are existing clinical trials databases at NLM and NIH. For example, the Library provides access to AIDSTRIALS and AIDSDRUGS and NLM's HSTAT has NIH intramural clinical trials. The National Cancer Institute and National Eye Institute also have publicly accessible clinical trials databases; several other institutes have internally accessible files. Dr. McCray said that NLM is developing a centralized database and search engine in a phased approach: by the end of FY 1999 we hope to have a system that will access all NIH-sponsored clinical trials; other Federal agency and private sector clinical trials will be added after this. She mentioned some of the major data elements to be included in the database that have already been agreed on by the NIH institutes. Finally, Dr. McCray did several sample searches for the Regents on an initial prototype database that contains data for about 1,000 clinical trials. She showed how the power of the Unified Medical Language System could be an important asset to the Clinical Trials Database.

Following the LHNCBC Director's report, Dr. Herbert Pardes commented that this is a "superb project." He consulted with the Clinical Trials Office at Columbia University and learned that such a database is very much needed. His office receives hundreds of calls from people asking about clinical trials in which they might participate. He said that it is important to have the Clinical Trials Database as broad in coverage as possible. Dr. McCray commented that the universe of clinical trials has been estimated to be at least 7,000. Dr. Pardes said that with an increasingly health-literate populace such a resource would be an actively used resource. Dr. Zimble commented that ultimately NLM should be looking at all types of clinical trials globally. He emphasized the importance of having the database jargon-free so that patients will understand what is being studied and whether they qualify. Michele Klein applauded the effort and said that one of the most frequent questions her medical library gets from the general public is about clinical trials. She asked whether one could enter a "disease condition and city/state" and pull up a match for a clinical trial. Dr. McCray said this is exactly what the database would be able to do. Dr. Sherrilynne Fuller said that keeping such a database current would be difficult--and crucial. Dr. McCray replied that when changes are made to clinical trial data at the NIH Clinical Center, that data is uploaded nightly into the database. How to get investigators to provide that information reliably is something that we are looking into. General Klaus Schafer suggested that it might be possible to link from data in the Clinical Trials Database to background information in MEDLINE via PubMed. Dr. McCray said that is an excellent idea that is being looked into.

IX. PUBLIC HEALTH PARTNERSHIP INITIATIVE

Betsy Humphreys, Acting NLM Associate Director for Library Operations, gave an overview of the Public Health Partnership Initiative, which had its origins in a 1995 conference of national, state, and local level public health officials, librarians, and medical informatics experts. The conference was jointly sponsored by NLM, the Office of the Assistant Secretary for Health, and the Centers for Disease Control and Prevention. Several of the recommendations in the resulting report related to NLM, namely that the Library should: publicize HPCC/NGI funding opportunities in channels that reach the public health community; create new funding opportunities that would encourage public health organizations to cooperate with the informatics community; and organize meeting sessions for professional organizations in this area. There were also recommendations to the NLM in the area of patient data privacy, ensuring that the public health sector understood what the National Information Infrastructure was about, expanding Unified Medical Language System applications in public health, and increasing the participation of public health people in graduate medical informatics training programs. One very pertinent recommendation, the focus of this presentation, was that NLM join with the CDC and other organizations to train the public health workforce in the use of communications technology and electronic information resources. As a result of this recommendation the program "Partners in Information Access for Public Health Professionals" was created. The partners are NLM, CDC, the Health Resources and Services Administration, the National Network of Libraries of Medicine (NN/LM), the Association of State and Territorial Health Officials, and the National Association of City and County Health Officials. The general goal of the partnership is to provide public health professionals with timely convenient access to information resources to help them improve the health of the American public. Ms. Humphreys showed the Partnership's Web page www.nlm.nih.gov/nno/partners.html) and described some of the ongoing activities of the program. The Partnership is directed by a steering committee with representatives of all the organizations involved. The Partnership recently announced 13 awards (about $50,000 each) through the NN/LM for outreach projects to reach various health public groups. She then introduced Mr. Neil Rambo, who is working with the Partnership under an Intergovernmental Personnel Act arrangement with NLM (he is also a member of the Regional Medical Library staff at the University of Washington).

Mr. Rambo described a project in the State of Washington that is building on the Washington Information Network for Public Health Officials (INPHO) initiative funded by CDC which has already connected all local health departments in the state to the Internet. Connecting the departments began in 1995 and was completed in 1997. The Regional Medical Library (at the University of Washington) is involved in providing onsite training for the local public health departments. A current focus of the project is to create networked information resources that are useful to the public health staff. Mr. Rambo described how a needs assessment was done in Washington at the local level through focus groups of various segments of the diverse public health workforce. One of the things they discovered was that some needs are universal (e.g., tools for contacting people in public health, calendaring and scheduling tools, how to search for information on the Internet and how to evaluate the quality of what is found, and how to use the technology to communicate with colleagues and constituencies). Because of the variation in people and situations, other needs are more particular to specific types of public health professionals. Mr. Rambo described the kinds of training and Web-based information resources developed to meet needs expressed in the focus groups. These include basic courses on how to use a browser and other Internet tools and some case studies on locating specific types of information useful to the groups that they worked with. The case studies are Web-based and self-paced. In addition to the training courses, Mr. Rambo described two Web sites that have been created: one is a compilation of reviewed links useful for public health activities, the other has public health news and topical stories from the local and state press.

Dr. Henry Foster commented that public health is not well taught in our medical schools; although we are making progress, there is still the residue of an earlier adversarial relationship between public health workers and physicians. He asked if the WAMI (regional) program is still in existence.

Mr. Rambo said that it is, although the program he was describing is confined to the state of Washington. Dr. Fuller said that she is working with WAMI to extend these kinds of services regionally. Michele Klein said that the objectives of the program Mr. Rambo reported on are "right on target." She described a project in her area (the Detroit Community AIDS Library) and its involvement with the public health department there. It was her feeling that public health officials lacked awareness of and access to existing information resources. She commented that it also seemed that public health officials were unaffiliated with an academic health center. Mr. Rambo said that in his area the public health establishment had just been connected; what they lacked was knowledge about how to use its potential. That is what his program is focusing on. He agreed with Ms. Klein's comment about the lack of academic affiliation, especially as distance increases from the University of Washington. Several listservs have been created to help overcome that sense of isolation. Ms. Humphreys commented that although "there is a long way to go," there has been a notable increase in information awareness on the part of the public health establishment in the last several years.

X. NLM SYSTEMS REINVENTION UPDATE

NLM Deputy Director Kent Smith briefly reviewed for the Regents NLM's experience as one of the Federal Government's first "reinvention laboratories," set up as part of the Administration's National Performance Review program. As a reinvention laboratory, NLM received several delegations of authority that exempted us from some red tape and that allowed us to speed the transition from NLM's legacy systems to more modern computer and communications architectures. The Library couldn't continue to maintain the old custom-built software and large mainframe system it had relied on for many years. Maintenance was a problem, flexibility was minimal, and staffing for these old systems was a headache. The "Year 2000" problem was also a spur to change. NLM organized its reinvention activities into three parts: access, retrieval, and internal support systems. The Regents have been briefed frequently about the Internet Grateful Med and PubMed systems, the mainstays of our access improvement. The Entrez retrieval system, developed at NLM's National Center for Biotechnology Information, was the vehicle of choice to replace the old ELHILL system. The internal support systems, the third component of NLM's reinvention, will be the subject of today's presentation by Mr. Joe Hutchins and Ms. Dianne McCutcheon. Mr. Smith showed a graph that portrayed some major milestones for the next six months: new PubMed features, improvements to Internet Grateful Med, a new Web-based TOXNET interface, and a new DOCLINE system (for interlibrary loan requests). He said that Voyager, which the Board will see today, is the new commercial "integrated library system"(ILS) used for acquisition, cataloging, serials control, preservation, and other important internal processing functions.

Mr. Hutchins described how the Library reviewed a number of candidate ILS systems over the years. The NLM testers finally settled on Voyager (a product of Endeavor Information Systems, Inc.) that provided much of the functionality the Library sought and which could be improved by the vendor for our special needs (these improvements would then permanently become part of the product).

Ms. McCutcheon then demonstrated the ILS. There is one record for each title, she said, which is shared throughout all the various staff processing modules. That record always reflects the current status of the piece. (In the legacy system, information was redundantly recorded in various databases and status changes were not immediately reflected in the public catalog.) She began by showing a record in the serials check-in module, looking at the history of the title and the status of the various issues, and progressed to the OPAC (online public access catalog), showing how the title would appear when it was retrieved by the public. The public can also see information about titles on order and when they are expected to be available. Among the improved features of the system is an extensive cross-reference ability that is much more sophisticated than in the legacy system. There are also links to resources on the Web from within the catalog; for example, there is a link from the record for the Dermatology Online Journal (a MEDLINE title) to the journal's Web site. NLM's public system, to be available both onsite and on the Web, will be called "LocatorPlus" and will be up by the end of April 1999.

Following the demonstration, Dr. Fuller complimented the staff and said that a changeover of this magnitude is a monumental accomplishment. Pamela André said she is astonished at the speed of NLM's development of an ILS. It is extraordinary that NLM was able to identify a package so quickly that, with modification, could be adapted and installed. The Library now has a firm base for its many literature-based operations.

XI. REPORT FROM EXTRAMURAL PROGRAMS

The Board approved the BOR operating procedures for calendar year 1999. Dr. Milton Corn, NLM Associate Director for Extramural Programs, reported on three topics: bioengineering, the publication grants program, and the electronic grant application review workbooks. As recently defined by NIH, bioengineering in health integrates physical, chemical, or mathematical sciences and engineering principles for the study of biology, medicine, behavior, or health. Bioengineering is an aspect of biomedicine that has not flourished as much as many of the other fields connected with biology and medicine. The NIH Revitalization Act of 1993 directed the HHS Secretary to conduct a study of bioengineering research. In response to this renewed interest, NIH: established the Bioengineering Consortium (BECON) as a central focus for NIH bioengineering research; held a 2-day symposium in February 1998; and is increasing the use of the Small Business Innovation Research (SBIR) program for bioengineering projects with commercial potential. Traditional NIH grant mechanisms have been made available by recent Bioengineering Program Announcements soliciting applications for research and development projects in bioengineering. NLM is a participant in this program and will fund grants that fall within the mission of the Library. As to publication grants, NLM awards small grants to support the preparation and publication of manuscripts. Publication may be in formats other than print on paper, e.g., electronic, film, etc. Grants are normally one to three years. The types of projects supported include: 1) analytical and comprehensive critical reviews; 2) scholarly works in the history of medicine and life sciences; 3) publications about health science informatics and health information science; 4) selected secondary literature tools in the health sciences (guides, atlases, abstracts, etc.); 5) English-language translations of important current or classic monographs; and 6) support for publication of important symposia. The Publication Grants Program does not support textbooks, projects of local interest only; proceedings of annual meetings, or projects highly likely to have substantial commercial sales. Finally, Dr. Corn described a new effort by many NIH Institutes to make grant-related material of each meeting available by Internet. Instead of the Grant Application Review Workbook that now is sent along with the Agenda Book, each Board member will be furnished a complete table of contents, an Internet address to contact, and a password which will permit access to all information, including summary statements. A demonstration of the system was presented to the Board members. This option will be available for the May meeting.

Closed Portion Of Meeting January 26, 1999, 4:15-5:15 p.m.: This portion of the meeting was closed to the public in accordance with the determination that it was concerned with matters exempt from mandatory disclosure under Sections 552b(c)(4) and 552(c)(6), Title 5, U.S. Code and Section 10(d) of the Federal Advisory Committee Act, as amended (5 U.S.C. Appendix 2). There was a discussion of procedures and policies regarding voting and confidentiality of application materials, committee discussions and recommendations. Members absented themselves from the meeting during discussion of and voting on applications from their own institutions, or other applications in which there was a potential conflict of interest, real or apparent. Members were asked to sign a statement to this effect. The Board reviewed 49 applications requesting $7,439,350.

XII. NLM YEAR 2000 COMPLIANCE STATUS

Roy Standing, Acting Director of the Office of Computer and Communications Systems, said that the NLM is on schedule to be fully Y2K compliant. The Y2K "problem" has three components: 1) proper leap year calculation (2000 is a leap year), 2) coding the year with only two digits, and 3) co-mingling status codes in date fields. He gave several examples of each issue and its impact on general purpose computer systems, medical devices, and consumer electronics. Mr. Standing reviewed several common ways that applications can be patched or fixed and he briefly described the solutions worked out for MEDLARS and data input for PubMed. The Office of Management and Budget has required that "mission-critical" systems receive independent certification by March 31, 1999. This applies to three NLM systems - database creation and maintenance, MEDLARS information retrieval (PubMed), and TOXNET. NLM has already self-certified all three as Y2K compliant. The Y2K impact on NLM falls in four areas: mainframe systems, Unix systems, desktop systems, and LAN. Mr. Standing briefly described how the Library is dealing with the problem in each of these areas. For example, NLM has inventoried the Y2K readiness of its desktop systems (1079 systems reporting). Some 120 systems failed; all but 5 can be fixed. The experience in the other areas is similarly encouraging. Noncompliant systems, where they are found, are being upgraded or replaced. He concluded by saying that although the Y2K problem appears to be manageable in the U.S., Europe, and especially Asia, may face major problems.

XIII. REPORT OF THE SUBCOMMITTEE ON OUTREACH AND PUBLIC INFORMATION

Dr. Albright said that the Subcommittee met yesterday morning and heard reports from staff about important recent events, including an October 1998 meeting of scientists and developers working on Visible Human applications (including an entire section in the Washington Post about the Visible Human program); the new MedlinePlus service; the new "Profiles in Science" Web site; the expanded Human Gene Map; a PowerPoint presentation being developed for use by Regents when talking about the NLM; and several announcements of awards for telemedicine, medical informatics, and public health services. The Subcommittee also saw an impressive assemblage of recent news clippings about the NLM and its programs: MedlinePlus, Visible Human project, and telemedicine are some of the subjects of the articles. Dr. Steven Philips commented that it seems the general public now makes more use of the NLM than the medical community. In addition to the PowerPoint presentation now being developed for the Regents, he suggested that the Library look into ways to set up one or two-hour workshops at professional meetings to acquaint physicians and other health professionals with the NLM's services. Upcoming events (both in March) are the opening of a major exhibit at the Library, "Asthma: The Breath of Life," and a conference on senior citizens and their use of the Internet to retrieve health information. Dr. Henry Foster, noting NLM's current exhibit on Elizabeth Blackwell (America's first woman M.D.), suggested the Library might want to do similar exhibits focusing on historic "firsts" relating to minority American physicians. Dr. Fuller commented that there are also opportunities for NLM to work with Native American groups; a group of students will be visiting Washington, D.C. later this year and might enjoy a visit to the NLM. Ms. Kathleen Cravedi described the asthma exhibit that would be installed in March in the Library's lobby and rotunda and the plans for the opening ceremonies.

XIV. APPOINTMENT OF THE NOMINATING COMMITTEE

Dr. Albright appointed a Committee to nominate a Regent to assume the Board of Regents Chair in 1999-2000. The Committee consists of Dr. James Zimble (Chair), Pamela André, Wendy Carter, and Col. Kristen Raines.

XV. BOARD ACTION ON RESOLUTION RELATING TO SPACE

The Board of Regents discussed a draft resolution before them that would bring to the attention of the HHS Secretary that the Library was facing an impending problem related to space and the adequacy of its physical facilities for the collection and for the staff. After discussion, and several changes in wording were incorporated, the resolution was unanimously approved by the Board. (See Appendix A.)

XVI. INTERNATIONAL PARTNERS MEETING

Ms. Susan P. Buyer, Acting Chief of the Office of Planning and Analysis, NLM Office of Health Information Programs Development, and Ms. Julia Royall, NLM Special Expert, presented the remarks of Dr. Elliot Siegel who was unable to attend. Ms. Buyer noted that the recently published report of the Long Range Planning Panel on International Programs, "A Global Vision for the National Library of Medicine," was being mailed out and is also available on the NLM Web site. She briefly recounted NLM's long history of international involvement. The Library is now faced with a "major reinvention job to do" for NLM's international programs. A new international modus operandi is needed, she said, one that is compatible with the Library's mission and with the growing emphasis on global biomedical research and healthcare needs. Ms. Buyer said that there was a 2-day International Partners meeting (most NLM International MEDLARS Centers joined by prospective collaborators from the World Bank, World Health Organization, and other interested organizations) at the NLM in December 1998. Ms. Julia Royall of the Office of Health Information Programs Development then described the discussions at that meeting. There were three major themes for study: document delivery, connectivity and infrastructure, and the special needs of developing countries. The reports of the pre-conference working groups are available on the Web. The Multilateral Initiative on Malaria (about which the Regents have heard previously) will continue work to advance communications and Internet connectivity at Malaria research sites in sub-Saharan Africa. We will encourage the development of new international DOCLINE libraries in Africa that agree to serve the document delivery needs of national or regional users before resorting to the NLM. This, together with the existing MEDLARS Center in South Africa, will result in a rational and self-limited means for NLM to help fulfill document delivery needs in Africa. Another interesting concept discussed as the meeting was that of "Regional Hubs" that might (in the words of the report) lead to a "loosely arrayed network of international centers for medical information." This would bring together the 20 MEDLARS centers and other local institutions and encourage them to collaborate in support of regional health information management. Representatives from MEDLARS Centers in India, South Korea, Taiwan, and Hong Kong were especially interested in this. High bandwidth connectivity testing and evaluation was another subject of interest. Institutional "twinning" of institutions in the U.S. and other countries seems to work very well. We need to answer such questions as how many such pairs there are, how many involve health and informatics, what are the common elements that lead to success, and what should be NLM's role. Informatics training is another topic of general interest. NIH's Fogarty International Center and the NLM have recently put in place a new multi-year grant program to support the training of African scientists in medical informatics. New publication forms are also of interest - electronic article preprints, author-distributed reprints, juried databases containing reviewer comments, and Web-site contents geared to developing countries.

Following these presentations, Dr. Kenneth Walker commented that the NLM is doing well in serving U.S. users and should now put more emphasis on serving those outside the U.S. Information will be a major force in the coming decades. "Information is the DNA of civilization," he said, and we have an "obligation to make our information seamlessly accessible to the rest of the world , particularly to developing countries." Three of the recommendations that came out of the recent Long Range Planning activity are pertinent here: the regional hubs, informatics training, and the "twinning" of institutions in the U.S. and other countries. We should now devise an action plan to carry out these and other recommended activities. Dr. Baruch commented that in the sharing of information there are no longer national boundaries. Medicine is just one area of needed assistance in developing countries. New methods of communication make possible the amassing of knowledge without limit. Document delivery is one crucial area that NLM should concentrate on; health professionals in developing countries are eager for full text. Perhaps a preprint service could be instituted. Dr. Marian Ball, who was the Regents' representative on the Long Range Planning Panel, echoed Dr. Walker's call for the development of an NLM action plan to encourage regional hubs, institutional "twinning," and medical informatics training. Dr. Fuller commented that with increasing global interconnectivity, regional relationships are not as important as they once were. A number of U.S. libraries are already providing document delivery "to the world." Credit cards are used so that there is no problem with the monetary exchange rates and where such services are affordable. NLM can help identify and make known libraries that serve worldwide constituencies.

XVII. TECHNOLOGY FOR TAMING DATA

Latanya Sweeney, Assistant Professor of Computer Science and of Public Policy and Carnegie-Mellon University, made a presentation to the Board on "Technology for Taming Data." She used visuals to show how hidden problems and assumptions in today's technologies can breed resentment on the part of the public. Nuclear power is an example: it is basically much less harmful to the environment than conventional sources of energy and the likelihood of danger is remote. There are tremendous opportunities in today's computer technology and the data explosion we are experiencing, but there are also hidden problems. How can we anticipate and deal with them? She used two example of such problems: privacy (which she talked about the previous evening as the Board's after-dinner speaker) and the Year 2000 (Y2K). She discussed the question of how much distortion must be introduced into a database to make it "anonymous," and with examples showed how the larger the database the less distortion is needed. In the absence of legislation, the extremes--both privacy advocates and data holders--now have no incentive to do anything. We should encourage researchers to use less identifiable data, when that is possible. Professor Sweeney said she has looked at studies published over the last five years in the American Journal of Epidemiology and found that less identifiable data would have served in some cases. She suggested that a useful resource NLM might consider building is a database containing descriptions of all person-specific databases. It would be valuable to NIH researchers who often rely on data without knowing that there are less extensive alternatives. On the subject of Y2K, she said that it can't be ignored because no one really knows the dimension of the problem at this point. If many people are affected, there could be a backlash that could have a dramatic impact on privacy. She did a small survey about how several medical institutions were preparing for Y2K and the results were discouraging: there were large gaps in what the kinds of equipment they were checking. She gave examples of equipment that is subject to failure, from implantable devices to laboratory machines. Carnegie-Mellon is planning to offer a service to assist hospitals and other institutions to identify Y2K problem areas. Following her presentation there was a general discussion among the Regents about how different areas of a hospital would be affected, from the emergency room to the computer center.

XVIII. ADJOURNMENT

The meeting was adjourned at 12:13 p.m.

ACTIONS TAKEN BY THE BOARD OF REGENTS:

* The Board of Regents reaffirmed the operating procedures for 1998 as recommended by the Division of Extramural Programs.

* The Board of Regents concurred with the recommendations of the Extramural Programs Subcommittee.

* The Board of Regents unanimously passed the text for a letter to the Secretary of Health and Human Services

ATTACHMENTS:

Roster - NLM Board of Regents

January 25, 1999 - Extramural Programs Subcommittee Meeting

January 26, 1999 - Subcommittee on Outreach and Public Information Meeting

February 5, 1999 - Letter to Secretary Donna Shalala, HHS, from Dr. Tenley Albright, Chair, NLM Board of Regents, regarding the BOR Resolution Regarding Concerns for the Adequacy of NLM's Physical Facility (Resolution attached)

I certify that, to the best of my knowledge, the foregoing minutes and attachments are accurate and complete.

Donald A.B. Lindberg

Director, National Library of Medicine

Tenley Albright, M.D.

Chair, NLM Board of Regents

Board of Regents

Extramural Programs Subcommittee Meeting

January 25, 1999

1:30 - 3:00 p.m.

ATTENDEES

Subcommittee Members Present:

Raymond J. Fonseca, D.M.D.

Wendy Carter (via phone)

Sherrilynne Fuller, Ph.D.

Michele Klein

Herbert Pardes, M.D.

James Zimble, M.D.

Subcommittee Member Absent:

Enriqueta Bond, Ph.D.

NLM Staff Present:

Milton Corn, M.D.

Peter Clepper

Sharee Pepper, Ph.D.

John Seachrist

Board of Regents

Subcommittee on Outreach and Public Information

January 26, 1999

7:45 - 9:00 a.m.

Subcommittee Members Present:

Tenley Albright, M.D., Chair

Marion Ball, E.D.

Henry Foster, M.D.

Steven Phillips, M.D.

Klaus Schafer, M.D.

Subcommittee Members Absent:

John Gage

Lois DeBakey, Ph.D.

NLM Staff Present:

Robert Mehnert

Kathleen Gardner Cravedi

Eleanor Pomeroy

Fred Wood

Julia Royall

Kent Smith

Invited Guest:

Keith Krueger, Friends of the National Library of Medicine


Attachment A

Resolution in Honor of the Bicentennial of the Library of Congress

Whereas, the Library of Congress is the Nation's oldest Federal cultural institution and the world's largest library, and

Whereas, the Library of Congress serves the research needs of the U.S. Congress and also serves all Americans through its popular Web site and its 22 reading rooms on Capitol Hill, and

Whereas, the Library of Congress promotes reading and literacy for all Americans through its Center for the Book and makes reading accessible to all through its National Library Services for the Blind and Physically handicapped, and

Whereas, the Library of Congress protects original works of authorship including literary, dramatic, musical, and artistic works, through its Copyright Office, and

Whereas, the Library of Congress provides essential free cataloging services to the Nation's Libraries, and

Whereas, the Library of Congress has made important contributions to the collections of the National Library of Medicine through a duplicate books program since 1911, and

Whereas, the Library of Congress and the National Library of Medicine have a long history of cooperative arrangements dating back to 1946 that have been of tremendous benefit to libraries throughout the U.S. and the world, and

Whereas, the Library of Congress and the National Library of medicine are working with other organizations to develop the National Digital Library for the new millennium:

It is hereby RESOLVED that the Board of Regents of the National Library of Medicine recognizes and applauds the Library of Congress in this Bicentennial Year of its founding, for its essential role to the U.S. Congress, the Nation's libraries, and all American citizens, as a leader in the information world and as an important part of our national heritage.

January 25, 2000