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Minutes of the Board of Regents January 2000

DEPARTMENT OF HEALTH AND HUMAN SERVICES

NATIONAL INSTITUTES OF HEALTH

NATIONAL LIBRARY OF MEDICINE

MINUTES OF THE BOARD OF REGENTS

JANUARY 25, 2000

The 123rd meeting of the Board of Regents was convened on January 25, 2000, at 9:00 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 9:00 a.m. to 1:00 p.m., followed by the closed session for consideration of grant applications until 1:30 p.m. The meeting was opened to the public from 1:30 p.m. until adjournment at 4:45 p.m. The agenda was modified due to the severe weather conditions at the time of the meeting and availibility of NLM staff.

MEMBERS PRESENT

Dr. Enriqueta Bond, Chair

Ms. Alison Bunting

Ms. Michele Klein Fedyshin

Dr. Raymond Fonseca

Dr. Henry Foster

Dr. Joshua Lederberg

EX OFFICIO AND ALTERNATE MEMBERS PRESENT

Ms. Wendy Carter representing Dr. Thomas Garthwaite

Colonel David Houglum representing Brigadier General Klaus Schafer

CONSULTANTS TO THE BOR PRESENT

Dr. Tenley Albright, Vital Sciences

Dr. Marion Ball, First Consulting Group

Dr. Kenneth Walker, Emory University School of Medicine

MEMBERS OF THE PUBLIC PRESENT

Dr. Thomas Basler, Medical University of South Carolina

Dr. William Cooper, Cooper and Associates [via teleconference]

Ms. Linda Watson, Cooper and Associates [via teleconference]

Ms. Lilianna Lopez, "The Blue Sheet"

FEDERAL EMPLOYEES PRESENT

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

Mr. Kent A. Smith, Deputy Director, NLM

Dr. Steven Phillips, Assistant Director for Research and Education, NLM

Dr. Francis Collins, Director, NHGR

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

Ms. Bonnie Kaps, Committee Management Officer, EP/NLM

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

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

Mr. Robert Mehnert, Chief, Office of Public Information, NLM

Ms. Pamela Meredith, Head, Reference Section, LO/NLM

Mr. Dwight Mowery, Grants Management Officer, EP/NLM

Mr. Donald Poppke, Executive Officer, NLM

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

I. OPENING REMARKS

Board Chair Dr. Enriqueta Bond welcomed the Regents, alternates, and guests to the 123rd meeting of the Board of Regents of the National Library of Medicine. She noted the presence of Dr. Morris Collen, Dr. Francis Collins, Director of the NIH National Human Genome Research Institute, and consultants Dr. Marion Ball and Dr. Kenneth Walker. She announced that the meeting agenda would be altered as required because of the blizzard in the Washington, D.C. area.

II. REMARKS BY THE NHGRI DIRECTOR

Dr. Francis Collins, Director of the National Human Genome Research Institute, said that much important work is being done by the Institute in cooperation with NLM's National Center for Biotechnology Information. The NCBI is a vital part of the genome project, especially in getting critical information into the hands of working scientists. Dr. Collins described how the project was born 10 years ago, in October 1990. He showed a time line, briefly recounting some of the highlights and milestones of the last decade. A pilot project, begun in 1996 and completed in 1999, was a prelude to the full scale sequencing of the human genome. The Human Gene Map, which now contains more than 35,000 genes (and is on the Web), is the result of partnership among collaborating universities and institutes and the NCBI. The forecast is for the entire sequence of the human genome to be completed well ahead of the originally projected 2005 schedule. Several large genome centers are doing much of the work: the Whitehead Institute, MIT, Baylor, Washington University (St. Louis), the Department of Energy in Walnut Creek, CA, and the Sanger Center in Cambridge, England. The entire project is being tracked centrally by the NCBI, and the Center maintains an extensive Web site. Our goal is to have a "working draft" of 90 percent of the human genome by this spring; this is a dramatic acceleration over initial estimates. A particularly gratifying milestone was reached last December when the complete sequence of chromosome 22 was announced. There is an emphasis now on detecting variants between individuals in the human genome; some of these will be critical in determining susceptibility to common diseases. Dr. Collins said that every disease has a hereditary contribution and that it would be immensely useful to have a "catalog" of all genetic variations. Work contributing to this catalog ends up in the NCBI databases. Diagnostic advances follow fairly quickly the discovery of genetic variations; therapeutic advances follow more slowly. In response to a comment by a Regent about how such information is used, Dr. Collins said that we need to have effective Federal legislation to prevent the abuse of predictive genetic information in health insurance. He ended his presentation with a scenario on a patient-physician interaction in the year 2010, describing how genetic testing that pinpoints which particular genes are involved with the patient's situation (for example, high cholesterol levels) can lead to interventions (and preventive measures in those areas involving risky behavior) that lengthen the patient's life.

III. CONSIDERATION OF MINUTES OF PREVIOUS MEETING

The Regents approved without change the minutes from the September 28-29, 1999, meeting.

IV. FUTURE BOARD MEETINGS

The Board of Regents will meet next on May 16-17, 2000. The BOR meeting next fall will be September 26-27. The date of January 30-31 was adopted for the meeting next winter.

V. REPORT OF THE NLM DIRECTOR

Dr. Lindberg said that NLM successfully completed the closeout of FY 1999 budget year. The FY 2000 appropriation is $215,214,000 a welcome increase of 16 percent over last year. The FY 2001 budget request has been sent to the Office of Management and Budget, but has not yet been made public. In the area of personnel, the Director announced that the NLM Deputy Executive Officer, Sally Burke, has retired. Ms. Becky Lyon has been named Deputy Associate Director for Library Operations. Roy Standing, who had been acting head of NLM's computer operation, has moved to a position in the State Department. NLM's Nancy Roderer has just been named to head the medical library at Johns Hopkins. As to legislation, Dr. Lindberg noted that we hope this year for action on the bill on medical records confidentiality, which has been previously reported to and discussed by the Board. A bill authorizing funding for the Next Generation Internet through FY 2004 was introduced in the last session and may be reintroduced this year. We are hopeful that NIH/NLM's role in NGI will be explicitly recognized. [Note: at the Congress's request, Dr. Lindberg testified on a new NGI bill on March 1, 2000.] He brought to the attention of the Regents the results of an updated study of Internet connectivity in the National Network of Libraries of Medicine. Ninety-one percent of all hospital libraries are now connected to the Internet, up from 24 percent in 1993 and 73 percent in 1997. All academic medical libraries are now connected. Michele Klein Fedyshin noted that one reason for the gratifying increase in hospital library connectivity is the support that NLM has dispensed over the years. The Director announced that the Library has just made 49 "outreach" contract awards to members of the NNLM to help them work with community organizations--schools, public libraries, churches, senior centers, etc.--to improve consumer access to electronic health information. The much-anticipated Y2K turned out to be a non-event for NLM, Dr. Lindberg said. Although there were no system failures or other problems connected with Y2K, a disgruntled former contractor broke into the NLM system in 1999 and was apprehended by the FBI and successfully prosecuted in the Federal courts. This was the first such prosecution by U.S. attorneys and thus establishes case law. The NLM Director reported on the BISTI (Biomedical Information Science and Technology Initiative) report. This report, presented in June 1999, recommends that NIH increase its activities in biomedical computing and its intersection with molecular biology. The report specifically suggested that NIH should support training to accomplish this. NLM, a pioneer in informatics training, can help meet this need by expanding the scope and size of some of the existing training programs it supports.

VI. RESOLUTION HONORING THE LIBRARY OF CONGRESS

Dr. Lindberg reported that the Library of Congress is celebrating its 200th anniversary of its founding on April 24, 1800. The NLM Director presented, and the Board unanimously approved, a resolution (Attachment A) honoring the Library of Congress on this occasion.

VII. NLM LONG RANGE PLAN

Dr. Enriqueta Bond reported that there was a successful meeting of advisors at NLM on December 1 to consider a draft Long Range Plan for 2000-2005. Changes coming out of this meeting are reflected in the Plan the Regents received prior to this meeting. Dr. Siegel and his staff, and others at NLM, did excellent work in preparing the Plan and the December 1 meeting. Dr. Bond briefly summarized the discussions of a number of panels at the December 1 meeting. She said that "health information for the public" emerged as a major direction for the NLM. According to the advisors, the idea of "just in time" information for the clinician is still is in a research mode and not ready for implementation. In another area, the advisors articulated a rich research agenda for medical informatics that the NLM should support. Training in bioinformatics was also discussed as an essential need for the "new biology," and distance learning is an important component of this training. There is a need to champion the "research publication of the future," according to the advisors; one aspect of this is merging electronic communications with video and audio. Permanent access to electronic information also was discussed as a crucial area for NLM, including the need to partner with other organizations and to develop standards. Global health was another area that would benefit from NLM partnering with other organizations and selecting strategic targets for investment. The revised report also reflects an increased emphasis on information activities related to molecular biology. Dr. Bond said that the Regents' Planning Subcommittee met yesterday and made several changes that are reflected in the Plan now before the Regents; the Subcommittee also asked that cost estimates be developed by NLM for the actions recommended in the Plan. The Subcommittee recommends that the Board formally adopt the plan.

VIII. APPOINTMENT OF NOMINATING COMMITTEE

Dr. Bond appointed a committee to nominate the Board Chair for 2000-2001: Dr. James Zimble, Chair, and Pamela Andre, Wendy Carter, and Col. Kristen Raines, members. The committee will report to the Board in May.

IX. REPORT OF THE ASSOCIATE DIRECTOR FOR EXTRAMURAL PROGRAMS

The Regents approved the BOR operating procedures for calendar year 2000. Dr. Milton Corn, NLM Associate Director for Extramural Programs, reported to the Board on the importance of NLM grant support to informatics research. Informatics research is quite different from classic biomedical research because of its engineering aspects. The grant is the most important instrument for funding biomedical research in the United States and is the primary mechanism used by the other NIH Institutes. Initially, the grant was the predominant instrument for research for the National Library of Medicine. From 1991 to 1998 there was a gradual growth in contract dollars and, at present, contracts have become a more important source of support for informatics research at the NLM. This rapid growth was due largely to Congressional interest in areas of national importance such as High Performance Computing and Communications and the Next Generation Internet. NLM believes research contracts provide the Library with an oversight capacity that is important to assuring that funds are spent as Congress intended.

X. PUBMED CENTRAL

Dr. David J. Lipman, Director of NLM's National Center for Biotechnology Information, gave the Board a quick update on PubMed Central, the web-based repository for primary research reports in the life sciences that will very soon be made available. He showed the Regents a prototype version of the PubMed Central web layout: how each record has an area reserved for publishers to customize with links and specialized information as they see fit; the NCBI-specified common elements of all records; and the various decisions made by the designers in how records are displayed and how they are navigated. After material is received from publishers in SGML, it must be validated and then is usually converted to XML. It goes into a database (a PubMed record is created at this time if there isn't already one) and is converted on the fly by a special program (created in-house) into HTML. There are several ways to get to the research reports in PubMed Central: users of PubMed/MEDLINE will see a special icon that links to records that have full text in PubMed Central; there will be a homepage for PubMed Central that, when searched, will look in PubMed for articles for which there are also PubMed Central records; and there will be a facility in the PubMed Central homepage for browsing each issue, like a table of contents. Dr. Lipman said that the chartered PubMed Central National Advisory Committee has been formed and will meet at NLM in March 2000. The Medical Research Councils of the U.S. and Canada are strongly supportive of PubMed Central and will send observers to the meeting. He told the Board about a number of medical associations and societies in the U.S., Canada, and the U.K., that will be signing onto the system in the future. Following Dr. Lipman's presentation, Dr. Lindberg said that one of NLM's indispensable roles in this project is to help set formatting and classification standards for the community.

XI. OUTREACH: HEALTH DISPARITIES

Community Health--A Model for Multiple Participation and Support

Dr. Thomas Basler of the Medical University of South Carolina (MUSC, in Charleston) described a collaborative community program that is aimed at providing health information to the Charleston Enterprise Community, a population comprised largely of immigrants and disadvantaged citizens. Information is delivered via the World Wide Web, while the implementation is delivered by the people within the community. Dr. Basler used graphics to show the geographic boundaries of the greater Charleston environment and the demographics of the 22,000 people in the 20 neighborhoods that make up the Enterprise Community. The health problems there include environmental hazards, infant mortality, hypertension, diabetes, cancer, and chronic diseases. The focus of the program is not "academic" but is on the community and on individuals. The community determines what is needed and how, where, and when the resources are delivered. There are several partners that are funding the program: NLM, MUSC Library, EPA, DOE, and the cities of Charleston and North Charleston. Host sites for delivering information include community centers, churches, county schools and libraries, and a private clinic (the only medical site in the network). Infrastructure (cables), hardware, and software have been installed in all sites. Among the Web-based resources available to the community through this program are general sites, such as MedlinePlus, Healthfinder, and Health Reference Center, and disease-specific resources on, for example, diabetes, alcoholism, heart disease, stroke, AIDS, and high cholesterol. The MUSC provides reference help, interlibrary loan service, and access to a variety of medical databases, including those with full text of books and articles. Dr. Basler said that publicity for the project was very important and was carried out through the community center, schools, and a health fair. Public librarians were introduced to PubMed, Internet Grateful Med, MedlinePlus, and Loansome Doc by MUSC staff. Among the lessons learned in this continuing program are that projects must be community-driven and involve people at all levels, that working "different" from the academic model is a key, that technology has to be taught before Web access, and that training must be tailored to fit different audiences--one size does not fit all.

Health Information Gateway for the Caribbean

Dr. William Cooper and Ms. Linda Watson (Cooper and Associates) spoke to the Regents by speakerphone from their offices in Charlottesville, Virginia. They are consultants on an NLM-sponsored project, "Health Information Gateway for the Caribbean," a partnership between the NLM and the University of Puerto Rico. The NLM became involved in 1997, when it received an appropriation of $1 million to benefit Haiti. The funds were channeled through Region 2 of the National Network of Libraries of Medicine, under a subcontract with the University of Puerto Rico, and Cooper and Associates were asked to serve as consultants. Dr. Cooper described how the $1 million investment by the NLM enhanced the computer and communications capabilities of Puerto Rico and Haiti to improve the health of their citizens. NLM provided the funding, the University of Puerto Rico (UPR) provided the institutional commitment plus in-kind support, and the Medical School of Haiti provided enthusiasm and an eagerness to improve their technological infrastructure. The goals of the project were to develop an integrated information management infrastructure--people, places, and things, and to provide outreach information services to the UPR, local hospitals and clinics in Puerto Rico, and to Haiti and the Dominican Republic. The role of the consultants was to facilitate discussions among faculty and administrators at UPR, ensure phased planning and implementation process, and be a go-between between NLM and UPR. After describing the key staff involved, in Puerto Rico, Haiti, the National Network of Libraries of Medicine, and the NLM, Ms. Watson outlined the accomplishments under the project. These include, in Puerto Rico: upgrading computers and networking for staff and students, improving the facilities in the medical library and enhancing the professional development of the staff there, supporting medical informatics training for medical faculty, and providing outreach services to local hospitals and clinics on Puerto Rico. The UPR hired an outreach librarian to conduct needs assessments and training of librarians in Puerto Rico, Haiti, and the Dominican Republic. The major goal was to connect health professionals at UPR-affiliated sites with needed information at the Library and via the Internet. Ms. Watson described how outreach, network connections, and training were accomplished at several medical institutions on Puerto Rico. The project had four major priorities in Haiti: library remodeling, collection development, telecommunications infrastructure, and staff training. Ms. Watson described how each was carried out successfully, and how the newly revitalized Haiti Medical Library was inaugurated on April 21, 1998. She quoted statements by the director of the Haiti Medical Library and the Dean for Academic Affairs at UPR on the success of the project and its impact on and value to the participants. Ms. Watson concluded her presentation by saying that the experience gained through this project should enable NLM to leverage its resources by establishing other partnerships in the international arena. The expertise established at the University of Puerto Rico should prove a valuable reservoir for other such undertakings.

Following the presentation by Dr. Cooper and Ms. Watson, Alison Bunting commented that the lesson she took from Dr. Basler's presentation is that in conducting outreach with consumers: (1) we must go into the communities where they live; (2) the "academic approach" works with health professionals but not with the general public; and (3) we need to be in it for the long haul. She found it interesting in the second presentation how outreach experience in the National Network of Libraries of Medicine could be translated to the international scene. There were parallels in the approaches, namely, that getting the right people involved and the right institutions to partner with are the keys to success. Dr. Basler, in response to a question from Ms. Bunting, said that the MUSC library and staff gained tremendous benefit from the Charleston project: they saw directly how hands-on involvement could pay off in improved health and how "getting out of the castle and into the village" could make a tremendous difference in people's lives. Ms. Bunting asked Dr. Cooper and Ms. Watson about the geopolitical relationship between Puerto Rico and Haiti: Does Puerto Rico see itself as having a leadership role in the Caribbean? Ms. Watson replied that the UPR does see itself in that role, in part because of previous collaborative arrangements between the University and other Caribbean countries (e.g., in public health, nursing, and migrant health) and the continuing involvement of the University with the National Network of Libraries of Medicine.

II. CLINICAL TRIALS DATABASE

Dr. Alexa McCray, Director of NLM's Lister Hill National Center for Biomedical Communications, has led the effort to develop an integrated database of clinical trial information on behalf of the NIH. Such a database is called for in the 1997 Food and Drug Administration Modernization Act. Dr. McCray, who had reported previously to the Board when the project was just beginning, demonstrated to the Regents the new "ClinicalTrials.gov," which will be publicly launched in February 2000. The information in the database has been provided to NLM by 21 NIH institutes and centers. There will be more than 4,000 clinical trials in the initial version, primarily those sponsored by NIH. There is a small number of private trials, primarily from the existing AIDSTRIALS (ACTIS) database and Cancernet. The next phase of ClinicalTrials.gov will include many more trials from other Federal agencies and the private sector. Dr. McCray demonstrated ClinicalTrials.gov to the Regents by doing searches that highlighted various features and capabilities of the database. The Regents were unanimous in their praise for the new database.

XIII. REPORT OF THE SUBCOMMITTEE ON OUTREACH AND PUBLIC INFORMATION

Dr. Henry Foster, Subcommittee chairman, had to leave the Regents' meeting for a previous engagement, so Dr. Steven Phillips and Dr. Marion Ball reported on this morning's meeting of the Subcommittee on Outreach and Public Information. Among the topics discussed were the installation of user-friendly health information kiosks in Iowa (Dr. Phillips is heading this project), the 49 outreach awards made by NLM that Dr. Lindberg reported on earlier, the new NLM partnership with Wilson High School in Washington, D.C., and publicity efforts centered on ClinicalTrials.gov. Keith Krueger, Executive Director of the Friends of the NLM, reported on plans for the planned fifth annual HII Conference. Bob Mehnert showed the Board several clips:

A scene from a recent episode of the television show, "ER," in which a MEDLINE search played an important role in treating a patient;

The 1985 ITT commercial featuring MEDLINE;

The Visible Human," part of the Frontiers of Medicine series, produced by Maryland Public Television and aired on November 5, 1999; and

Andy Rooney's congratulations to the Medical Library Association on the occasion of its centennial anniversary.

XIV. CUSTOMER SERVICE REINVENTION

Pamela Meredith, Head of the Reference Section, Public Services Division, reported to the Board about the major changes the Library has made in how it receives and responds to inquiries from the public and the professions. Customers are given one point of contact at NLM, whether they e-mail us at custserv@nlm.nih.gov, call us toll-free at 1-888-FINDNLM, write, or fax. The Reference and Customer Service trained staff are able to handle the great majority of inquiries (about 85 percent) and only occasionally have to consult experts or pass questions on to specialists in the programs. Ms. Meredith gave some examples of the great variety of questions that are asked; many are for verification of holdings, others are questions about hours of operation, how to use NLM databases (many are about PubMed/MEDLINE), and general reference queries. Sixty-five "frequently asked questions" that have been distilled from the queries were put up on the NLM web site and received 27,000 hits last year. There is sophisticated help-desk software that helps route and track all e-mail and phone inquiries. There are now only four choices on the greatly simplified NLM "phone tree"; it is very easy for the caller to get to a "live" customer service representative. There are practically no busy signals: in 1999, 97 percent of all calls were answered in less than 15 seconds. Ms. Meredith described how the e-mail requests are handled with the help-desk software: how they are categorized, batched, assigned, tracked, and followed up. Altogether, there are more than 50,000 inquiries a year.

Following Ms. Meredith's presentation, Michele Klein Fedyshin praised NLM's actions in improving and streamlining the customer service interaction. She was surprised at how the topics handled by the NLM staff parallel the inquiries handled by her staff at the University of Pittsburgh. She said that continuing to collect such in-depth statistics will be invaluable to maintaining the service. Dr. Morris Collen noted that when he was preparing his work on the history of medical informatics he relied heavily on the competent and helpful reference staff at NLM. Ms. Meredith said that she would be glad to share the NLM reference statistics with other libraries.

XV. ADJOURNMENT

The Board of Regents adjourned at 4:45 p.m.

ACTIONS TAKEN BY THE BOARD OF REGENTS

The Board of Regents unanimously approved a resolution in honor of the Bicentennial of the Library of Congress

Dr. Enriqueta Bond, BOR Chair, appointed the Nominating Committee to select a Chair for the coming year

The Board of Regents reaffirmed the operating procedures for 2000 as recommended by the Division of Extramural Programs

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

ATTACHMENTS

Board Resolution - Library of Congress Bicentenial

Roster - NLM Board of Regents

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

Donald A.B. Lindberg, M.D.

Director, National Library of Medicine

Enriqueta Bond, Ph.D.

Chair, NLM Board of Regents

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.