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Minutes of the Board of Regents May 1999

DEPARTMENT OF HEALTH AND HUMAN SERVICES

NATIONAL INSTITUTES OF HEALTH

NATIONAL LIBRARY OF MEDICINE

MINUTES OF THE BOARD OF REGENTS

May 4-5, 1999

The 121st meeting of the Board of Regents was convened on May 4, 1999, 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 3:45 p.m., followed by the closed session for consideration of grant applications until 4:30 p.m. On May 5, the meeting was reconvened and open to the public from 9:00 a.m. until adjournment at 11:30 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

Mr. John Gage

Ms. Michele Klein

Dr. Joshua Lederberg

EX OFFICIO AND ALTERNATE MEMBERS PRESENT

Ms. Pamela Q.J. Andre

Ms. Wendy Carter

Dr. Mary Clutter

Rear Admiral Kenneth Moritsugu

Colonel Kristen Raines, representing Lt. Gen. Ronald Blanck

Dr. Richard Rowberg, representing Dr. James Billington

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

Dr. Michael Cooper, University of California, Berkeley

Mr. Steven Foote, PerryDeanRogers & Partners

Ms. Michelle Jeske, San Antonio Public Library

Mr. Donald King, Armed Forces Institute of Pathology

Ms. Haimi Shiferan, Blue Sheet

FEDERAL EMPLOYEES PRESENT

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

Dr. Harold Schoolman, Deputy Director for Research & Education, NLM

Dr. Pearl O'Rourke, Deputy Associate Director for Science Policy, NIH

Dr. Michael Ackerman, High Performance Computing and Communication, NLM

Dr. Fasika Aklilu, National Center for Biotechnology Information, NLM

Ms. Suzanne Aubuchon, Office of the Director, NLM

Ms. Sally Burke, Deputy Executive Officer, NLM

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

Ms. Patricia Carson, Office of the Director, NLM

Dr. Jie Chen, National Center for Biotechnology Information, NLM

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

Dr. Elizabeth Fee, History of medicine Division, NLM

Dr. Wataru Fujibuchi, National Center for Biotechnology Information, NLM

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

Ms. Frances Howard, Division of Extramural Programs, NLM

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

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

Ms. Bonnie Kaps, Committee Management Office, NLM

Ms. Deborah Katz, Lister Hill National Center for Biomedical Communications, NLM

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

Dr. Boris Kirioutine, National Center for Biotechnology Information, NLM

Mr. Mr. Peter Kuehl, National Center for Biotechnology Information, NLM

Ms. Eve-Marie Lacroix, Library Operations, 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

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

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

Dr. Sharee Pepper, Office of Extramural Programs, NLM

Mr. Donald Poppke, Associate Director for Administrative Management, NLM

Dr. Leigh Riley, National Center for Biotechnology Information, 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

Ms. Kristine Scannell, Library Operaitons, NLM

Dr. Elliot Siegel, Associate Director for Health Information Programs Development, NLM

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

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

Mr. David Walker, National Center for Biotechnology Information

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

Mr. Ted Youwer, Office of Administrative Management Services, NLM

I. OPENING REMARKS

Board Chair Dr. Tenley Albright welcomed the Regents and guests to the 121st meeting of the Board of Regents of the National Library of Medicine. Dr. Albright welcomed guests Dr. Michael D. Cooper, Steven Foote, Michelle Jeske, and Dr. Donald King. She also welcomed consultants Dr. Marion Ball, Dr. Steven Phillips, and Dr. Kenneth Walker.

II. REMARKS BY THE NIH DEPUTY ASSOCIATE DIRECTOR FOR SCIENCE POLICY

Dr. Pearl O'Rourke briefly described the role of the NIH Office of Science Policy and its functions in the areas of science policy and planning, recombinant DNA activities, evaluation, and science education. She discussed the 1996 Health Insurance Portability & Accountability Act, which requires the Secretary of Health and Human Services to submit to Congress by February 2000 privacy standards on electronically transmitted health information (if the Congress does not first pass a law by August 21, 1999). Dr. O'Rourke said that there are several draft bills on the subject, but it was her guess that none would be enacted by August. She then discussed the definitions of "health information," "health care," and the assumptions and recommendations contained in a draft proposal by the HHS Secretary. She drew a distinction between what health information would be covered in personal medical records and in research records. NIH was asked to look at the research information part of the recommendation--those parts that have nothing to do with health care.

Dr. O'Rourke gave several examples to show that a clear distinction between the two could not always be easily drawn. The Secretary, in her formulation, has said that "all information is the same," there will not be specific protections, say, for genetic information, or for information derived from research that is publicly versus privately funded. Only certain categories (for example, providers, payers, patients) can have access to the information without authorization; all others are denied. Dr. O'Rourke said there was not unanimity in agreeing to these categories. Also, the Secretary stipulated under what conditions individually identifiable health information in a research proposal could be disclosed without consent; these conditions involve an Institutional Review Board (IRB) review or an "IRB like" review. Dr. O'Rourke discussed the Secretary's conditions. She also described the differences of opinion within the NIH community about under what conditions subjects can have access to personal health information derived from their participation in a study. She said that the resolution of the several sticking points will come from "the Hill," and she briefly described the various bills being put together in the Congress to deal with health information and privacy. Just exactly what is "personally identifiable" is crucial to all these bills; definitions of coding and different levels of encryption come into play at this point. NIH's position is that true anonymity is the only way to be completely nonidentifiable.

III. REPORT FROM THE PHS SURGEON GENERAL'S OFFICE

Rear Admiral Kenneth P. Moritsugu, Deputy Surgeon General, reminded the Board that there are three high priorities of the Public Health Service, which were described at an earlier meeting by Dr. David Satcher. The first is to move toward establishing a balanced health system that would: include a healthy start in life for every child, promote healthy life styles, and improve the mental health component of the system. The second priority is to maintain a global approach to health, including a safe food and blood supply, dealing with infectious diseases, and monitoring bioterrorism. The third priority is to eliminate disparities in health resulting from discrimination against racial minorities and women. Work in this area includes infant mortality, child and adult immunization, HIV-AIDS, cardiovascular diseases, cancer screening, and diabetes. We have the lofty goal of eliminating disparities in those areas by 2010. Dr. Moritsugu said that there is more need than ever for these priorities. For example, there is today a potential for bioterrorism: one need only have a postage stamp and $25 to buy anthrax to present a threat. The mass movement of populations (as in Kosovo) reinforces the need for a global perspective on health. Youth violence in our communities should give us a wake up call for the importance of mental health issues, he added. Within the next several weeks there will be a call to action regarding suicide prevention based on a recent conference. A Surgeon General's report on mental health will be released within a year. Dr. Moritsugu ended by mentioning several recent natural disasters in which the PHS Commissioned Corps has played an important role.

IV. CONSIDERATION OF MINUTES OF PREVIOUS MEETING

The Regents approved without change the minutes of the January 26-27, 1999, meeting.

V. FUTURE BOARD MEETINGS

The Board of Regents will meet next on September 28-29, 1999. Next winter's meeting will be January 25-26, 2000. The date of May 16-17, 2000, was adopted for the meeting next spring.

VI. REPORT OF THE NLM DIRECTOR

Dr. Lindberg reported that the President's budget for FY 2000 has been submitted to Congress and provides $185,654,000 for the NLM, an increase of 2.4percent over FY 1999. The increase is targeted toward NCBI activities, the clinical trials database, AIDS information activities, and basic NLM services. The FY 2000 budget also provides for continued support of NLM's reinvention activities. The NLM Director announced the planned retirement in June of Dr. Harold M. Schoolman, NLM Deputy Director for Research and Education. Dr. Lindberg also announced that Dr. Larry Hunter of the Lister Hill Center (LHC) has taken a position with the National Cancer Institute and that Bill Willmering of Library Operations and Dr. Michael Weisberg, LHC, have retired. Earl Henderson, LHC Deputy Director then introduced new staff member Deborah G. Katz, who is joining the team engaged in designing the clinical trials database. Dr. Dennis Benson of the National Center for Biotechnology Information introduced several new members of that organization: Dr. Fasika Aklilu (from Ethiopia) and Dr. Leigh A. Riley, who will both be working in the NCBI Information Engineering Branch; and Dr. Jie Chen (China), Dr. Wataru Fujibuchi (Japan), Dr. Boris A. Kirioutine (Russia), Peter Kuehl, and David Roland Walker, who have all joined the NCBI Computational Biology Branch. In the area of legislation, Dr. Lindberg discussed the issue of database protection as embodied in the bill titled "Collections of Information Antipiracy Act" (introduced by Howard Coble, R-NC, as H.R. 354). Dr. Joshua Lederberg recently testified in the Congress about this legislation on behalf of the American Association for the Advancement of Science. Although database piracy must be faced, Dr. Lederberg said that there was a general consensus in the scientific community that this bill goes too far. A well-crafted alternative proposal needs to be written and introduced, he added. Dr. Lindberg next described his recent testimony (along with the Director of the National Heart, Lung, and Blood Institute) before the House Committee on Government Reform on the subject of complementary and alternative medicine, and especially chelation therapies for cardiovascular diseases. The NLM Director testified about how NLM selects journals for indexing, the satisfactory level of representation of alternative medicine journals in MEDLINE and the large number of articles that can be found in the NLM database relating to chelation therapy. Dr. Lindberg briefly reported on the expanded Library Associate Fellowship program under which selected recent library school graduates receive training in medical librarianship. Over the years this program has trained many who have gone on to positions of responsibility and leadership in the medical library community. For the 1998-99 year, the number of fellows has doubled (to eight) and a second optional year has been added that provides an "externship"--training at another site. Potential sites for this second year have been evaluated by outside reviewers and announced. Dr. Lindberg reported on the recent meeting of the Multilateral Initiative on Malaria in Durban, South Africa. The Regents have in the past heard about NLM's involvement in improving communications for African malaria researchers. NLM's Dr. Eliot Siegel and Julia Royall were involved in helping to set up the Conference, and Dr. Lindberg addressed a plenary session of the almost 900 attendees. The NLM Director described briefly the recent "HII'99" conference sponsored by the Friends of the National Library of Medicine. There were presentations by Senator James Jeffords of Vermont and Wyoming Governor Jim Geringer;

Dr. Lindberg was moderator of one of the plenary sessions. Immediately following the HII'99 conference was a G7/G8 Global Healthcare Applications Forum on telemedicine, also sponsored by the Friends, at which the NLM Director made a presentation at the opening plenary session.

Dr. Lindberg reported that NIH Director Varmus is requiring all NIH components to draft a long range plan by the end of this year. NLM has had a long range plan since 1986 which it has supplemented periodically on specific topics. Because time is short, the Library will short-circuit to some degree the lengthy planning process used in the past. NLM long range plans always involve the participation of the Regents as reviewers, and individual Board members and others who have helped in the past are welcome to become involved in the planning process as they wish. Dr. Elliot Siegel and his staff will be coordinating the preparation of the plan. The last item reported by Dr. Lindberg was a conference at NIH on "Older Adults, Health Information, and the World Wide Web." Dr. Lindberg was one of the keynote speakers and he briefly described his presentation and showed the Board several videoclips he used.

VII. AWARDS

Dr. Albright presented the 1999 Frank B. Rogers Award to Eve-Marie Lacroix, Chief of the Public Services Division, Library Operations, for "her rapid and highly successful design and implementation of MedlinePlus which has significantly improved the public's access to high quality health information." Dr. Lindberg presented the 1999 NLM Directors Award to two staff members: Theodore E. Youwer, Chief of the Administrative Management Services Office, for "his expert direction of the Office of Administrative Management Services and consistently high quality service provided to all NLM employees" and to Susan Buyer of the Office of Health Information Programs Development for "her leadership and extremely effective contributions to the NLM's planning process."

VIII. PHYSICAL FACILITY ASSESSMENT

In introducing this subject, Dr. Albright noted that the Regents, at their last meeting, passed a resolution addressed to the HHS Secretary on the subject of an impending problem with adequate space at the National Library of Medicine for its collections and staff. A reply has been received from the Secretary, dated April 8, in which she acknowledges the Board's concern. Dr. Lindberg commented that the NLM is proceeding in an orderly fashion to meet the twin problems of how to provide storage for the continuing increase in published literature and how to handle and preserve information published in electronic form. Dr. Lederberg testified on April 20 to the House Subcommittee on Labor, Health and Human Services of the Committee on Appropriations on behalf of NLM, and he noted NLM's incipient problem with space. His written testimony was provided to the Board of Regents.

Donald Poppke, NLM Associate Director for Administrative Management, briefly reviewed for the Regents the history of NLM's two buildings: the 1962 building that houses the collections and reading rooms and the 1980 Lister Hill Center Building that contains offices, auditorium, cafeteria, and audiovisual and computer facilities. The two buildings were planned to hold 678 people; today they have almost 1,000. This is possible only because public space and classrooms have been converted to hold people. The collection also continues to grow and it is projected that we will run out of space in 2004; that date could be extended to 2008 if we can move staff out of areas originally designated for stacks. Mr. Poppke noted that this year's Congressional justification language lays the groundwork for the need for space. Dr. Lederberg and Dr. Lindberg both noted the problem prominently in their testimony to the House Appropriations Subcommittee. The Board's resolution to the HHS Secretary, mentioned earlier, is also helpful. Also, NLM commissioned two studies to look at various aspects of the space problem. To give the Board an idea of the complicated process, Mr. Poppke recounted the many steps required to see the Lister Hill Center Building through from conception (1966) to completion (1980). He then introduced Dr. Michael D. Cooper, Professor of Information Management at the University of California (Berkeley), whose academic interests are in the economics of information. Dr. Cooper was on leave from UC in the late 1970s to work at the NLM as computer performance evaluation specialist. At the current time, he has just completed a study of the economic impact and alternatives of the various storage options NLM has available to it.

Dr. Cooper used a series of visuals to show the six main options he considered for long range space planning at NLM. He considered two ways that material could be stored: compact shelving (movable stacks on tracks with most aisles eliminated) and high-density shelving (high ceilings with deep shelves and materials are stored by size). The options included (1) remodel the B2 level of 38A (Lister Hill Center) and install compact shelving; (2) dig underground storage facility; (3) construct a multi-use building; (4) above-ground storage facility with high-density shelving; (5) building an off-campus storage facility; and (6) renting space in an existing facility. Using an economic approach (construction costs, rental costs, delivery time and cost for a volume, etc.), Dr. Cooper presented the options in terms of increasing cost per volume, ranging from $3.28 to $9.61. It was difficult to cost out the multi-use building, which would be used for both collection storage and staff; his calculation deliberately left out the advantages accruing to having additional space for staff and other non-collection uses. He discussed the pros and cons of the different options balanced against the estimated costs of construction and the time needed for delivering materials to the user. Also, if the material is delivered electronically to patrons (via scanning, for example), the time calculations are obviously changed radically. Dr. Cooper's report was distributed to the Regents and is available.

Mr. Steven Foote, President of the Boston architectural firm Perry Dean Rogers and Partners, was introduced by Mr. Poppke. The firm has much experience in designing health sciences and other libraries, and Mr. Foote has published on that topic. Mr. Foote said that he estimates the NLM will fall short by about 50percent of its current square footage to grow to the year 2020. He presented tables showing that space for staff will require an additional 154,000 square feet; the collections will need 65,000 square feet (even utilizing compact and high-density shelving). He presented a series of options of how to accommodate this growth on the NLM site. After presenting a review of current space allocation, Mr. Foote showed several alternative possibilities for reusing the available facilities. He noted that the layout of space in the 10-storey Lister Hill Center was actually very efficient; it is just too small. He briefly reviewed existing constraints on the use of the NLM grounds: for example, the 215-foot set-back around the NIH property lines, and the understanding that tall buildings will not be constructed near the perimeter of the campus. Using, a wooden model, Mr. Foote showed the Regents various options for constructing additional facilities for the NLM. These range from extending the existing terrace area between the two buildings, to adding a wing to the Lister Hill Center, to constructing a separate facility behind the NLM. Mr. Foote concluded by saying that NLM has a tremendous opportunity for expanding its facility, and there are several options for doing this, depending on budget and time available.

There was a general discussion by the Regents about space needs and the alternatives for addressing the problem. Dr. Bond presented a motion to recommend a feasibility study to explore the various options available to acquire additional space and the cost and time trade-offs they would entail. The motion was adopted unanimously.

IX. HEALTH INFORMATION FOR THE PUBLIC

Betsy Humphreys, Acting Associate Director for Library Operations, briefly recounted for the Board some of the background leading up to NLM's involvement with consumer health information. At the NLM Friends April 1998 HII Conference, there was an announcement that, working with Friends, the Kellogg Foundation, the Public Library Association, and the Medical Library Association, the NLM would undertake a pilot project with public libraries to improve the public's access to health information. Last October, NLM launched the pilot project and at the same time announced MedlinePlus, a new NLM health information site for the public. MedlinePlus links consumers to authoritative information put out by NIH, other Government agencies, professional societies, etc. At a retreat for senior NLM staff last December, the Library's emerging role in the area of consumer health information was discussed and supported. In May 1999, NLM will convene an ad hoc advisory group to look at MedlinePlus (with a focus on diabetes) to see if the Library is taking the correct approach to providing health information for the public. Dr. Martin M. Cummings, former NLM Director, is chairing that group. We hope to have a report on the public library pilot project later this year. Ms. Humphreys distributed to the Regents the proposed scope statement for NLM's initiative to improve the public's access to health information. After she reviewed high points of the statement, the Regents made several minor amendments and approved it. [See Attachment I.]

Becky Lyon, Head of NLM's National Network Office, gave a status report on the pilot public library project. The project involves more than 200 libraries in 39 participating library systems in 9 staes and the District of Columbia. The evaluation of the project is headed by Dr. Fred Wood of the NLM Office of Health Information Programs Development. Brief monthly written reports are received from the 39 library systems and there is a conference call every 4 to 6 weeks. There is also a listserv for the participants and a private Web site where a variety of useful information is posted. Ms. Lyon said several focus groups sessions of users have been conducted. Twelve of the sites have been visited so far. The preliminary information gathered seems to indicate that health information ranks in the top 5 to 10 categories of information requested at public libraries. Most of the libraries have very limited collections of health information (although they do rely very heavily on their print collections to help patrons). The public librarians say they need training on how to answer health questions and how to use resources like MEDLINE. Although all the libraries have Internet access, the number of workstations and quality of access varies (although many report that they are upgrading their Internet connection). The Health Reference Center was a frequently cited source of electronic information for the partner libraries. Difficulty for patrons and librarians with medical terminology was a common problem. Patrons inevitably want to take something home with them--a book or printout; they generally don't want to wait to get something on interlibrary loan. This is reflected in the fact that document delivery requests from these libraries to the NN/LM have not risen. MedlinePlus is very popular with the public librarians and they are relying on it more and more. They are also turning increasingly to MEDLINE to answer difficult questions (and they report that high school students frequently use MEDLINE for class projects). The focus groups with users showed that there is a healthy wariness about the quality of the information they retrieve from the Internet, and many of the users said they take the information they find about diagnosis or treatment to their own doctors. They also made suggestions for improving MedlinePlus, including suggestions for adding to the popular "health topics" feature.

Michelle Jeske, Electronic Resources Coordinator of the San Antonio Public Library, gave the Regents the perspective from the point of view of one of NLM's participating public library systems. The San Antonio Public Library, the 12th largest in the country, has a modern (1995) main library building, 18 branch libraries, and 3 bookmobiles. The system has: 1.8 million items in its collection, more than 3 million visits annually, 460,000 card holders, resources for Spanish speakers (almost 40percent speak that language), a genealogy center, and a Government documents repository. With the assistance of grants the library has established computer technology centers, and it subscribes to several online databases (including MEDLINE and MedlinePlus, which are accessible to the public). There are 200 public access computers (systemwide); 67 offer unfiltered Internet access. The library system is underfunded, Ms. Jeske said, spending only $12 per year per capita versus a national average of $19. Ms. Jeske highlighted the importance of online services provided by the public library by noting that there is a "digital divide" that continues to widen between certain groups of Americans, with low income, minorities, the young, and the elderly having less access. The Library has had some success in seeking outside funding to improve the computer-based services it can offer its patrons, and she described several grant applications that are pending. Ms. Jeske then described the San Antonio experience with the NLM-sponsored consumer health project. They do have heavily used circulating and reference health collections, but they are inadequate. They also have good access to a selection of health periodicals through online databases. Classes on finding health information on the Internet, offered by library staff, are popular and well attended, and MedlinePlus forms an important part of the curriculum. Two or three public access computers are being purchased by the San Antonio Public Library with the $5000 stipend provided by NLM. A special MedlinePlus training class, conducted by the University of Texas Health Sciences Center, was held for 21 students; additional classes were held on Internet Grateful Med and PubMed. There was local publicity through newspapers and magazines. Among the findings of a survey conducted of public library staff who used the health information resources provided by NLM: MEDLINE is complicated for the average lay person to use and the information is often too technical; MedlinePlus is popular, but some patrons also have difficulty navigating it; among the most common subjects sought were lupus, diabetes, Alzheimer's, and urinary incontinence; and the Spanish information made accessible through MedlinePlus is much appreciated. In summary, Ms. Jeske said that the public library is the ideal vehicle for providing access to health information for the public and that the NLM's efforts to point users to good health information are much appreciated. She applauded MedlinePlus, saying it is authoritative, fairly simple to use, and provides full text. One very important benefit of the project is the cooperation that it has engendered, both locally and with the NLM.

Dr. Bond commented that the members of the Board's Planning Subcommittee, which reviewed the program at yesterday's meeting, were impressed with MedlinePlus. She emphasized that it is only the first such NLM product and that as it is evaluated it will be reshaped and advanced. Dr. Walker said the needs of NLM's scientific constituencies are predictable and relatively unchangeable, whereas, in the long run, NLM's new programs for consumers, such as the new MedlinePlus, may end up even more important. There was a discussion of the need for more consumer health information in Spanish, and Dr. Lindberg described "NOAH," a volunteer effort of librarians in New York City to point to sources of medical information for consumers and link to New York resources. NOAH translates information for NIH Institutes into Spanish. NLM's MedlinePlus points to NOAH in a number of places.

X. REPORT FROM EXTRAMURAL PROGRAMS

In addition to a review of the EP budget, Dr. Milton Corn, Associate Director for Extramural Programs, presented an update on the Digital Libraries Initiative and a brief overview of NLM's Medical Informatics program.

The Digital Libraries Initiative - Phase 2 is an initiative that explores innovative digital libraries research and applications. DLI-2 is administered by the National Science Foundation and is jointly sponsored by the National Science Foundation, the Defense Advanced Research Projects Agency, The National Library of Medicine, the Library of Congress, the National Aeronautic and Space Administration, and the National Endowment for the Humanities and others NLM has contributed $2 million to this program. The Library's involvement began in the second phase with the intent to expand the pool of researchers involved in digital library research in the health care community. The review of approximately 400 applications was concluded in January 1999 and a confidential, tentative list of potential awardees was presented to the Regents.

For a number of years, NLM has emphasized medical informatics in its extramural programs of research and training. Within this field we distinguish the area of medical informatics, related primarily to health care, and computational molecular biology, primarily related to basic life sciences. Approximately sixty research projects, including several research related resource projects, are active in this fiscal year.

NLM also supports twelve training program grants in which 140 trainees are enrolled. There are also a dozen individual fellowship awardees. For the most part, the emphasis is on medical informatics, with some training opportunities in computational molecular biology.

Closed Portion Of the Meeting: May 4, 1999 3:45-4:30 pm: 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 53 applications requesting $9,624,249 (total 1st year.)

XI. PRESIDENT'S INFORMATION TECHNOLOGY ADVISORY COMMITTEE

Board member Dr. Sherrilynne Fuller, a member of the President's Information Technology Advisory Committee, described briefly the background leading up to the establishment of the Committee by Executive Order and its charge to look into the High Performance Computing and Communications program and the Next Generation Internet Initiative and to make recommendations to the President. She said that it was surprising that such a disparate group of 26 people (from academia and industry) could work so effectively together and reach as much agreement as they did. She and Dr. Ted Shortliffe of Stanford University represented the medical community. The Committee's meetings are open and there is a Web page at <www.ccic.gov/ac> with information about its reports and links to other agencies with which it worked. The Committee's interim report was delivered in August 1998. Dr. Fuller briefly described the findings in the final report, released in February 1999. The principal finding is that there is an underinvestment in long-term basic information technology research and that this trend must be reversed to ensure the continued growth and success of the information technology enterprise. The Committee recommends that the total budget for this be increased to one billion dollars by 2004. Ensuring an educated workforce in this area is also a key responsibility of the Federal Government. Four research priorities were identified by the Committee: software, scalable information infrastructure, high-end computing, and socioeconomic issues. The Committee suggested that the National Science Foundation be the lead agency in seeing that the recommendations are implemented and that a senior-level cross agency committee be established ensure continuing coordination. The President's Committee has been asked to continue to monitor the field and to make recommendations.

Following Dr. Fuller's report, John Gage provided insight into "some of the fights that lay behind the report," and how some of the language contained in the original draft was altered as the report went through review. He said that the report focuses on two themes: one is to support projects in brand new (and unpredictable) areas that have never been thought about before; the other is to try to solve a big problem--the need for much faster computers. The PITAC report is important and will repay close study.

XII. REALIZING THE POTENTIAL OF C4I

Dr. Jordan Baruch, a member of a National Research Council Committee for the Review of Programs for Command, Control, Communications, Computers, and Intelligence in the Department of Defense, reported to the Regents about a recent study and report issued by the Committee. The study, authorized by the 1996 Defense Authorization, directed DOD to contract with the NRC for a comprehensive "C4I" review focusing on cross-service and inter-service issues, especially interoperability. A factor contributing to the problem is that the Congress has directed each military branch to budget and secure its own C4I equipment, thus practically ensuring noninteroperability. Fiercely independent services and disciplines interfere with close collaboration across boundaries. He also noted that the military occupations in the general area of "information specialist" are not highly coveted or respected. Dr. Baruch briefly described each of the Committee's eight recommendations. These touched on such topics as the need to establish in each service a specialization in "combat-information operations" and, under the Defense Department, an Institute for Military Information Technology. There were also recommendations about budgets, resource allocations, and management metrics for improving cross-service information operations.

Following the presentation, General Schafer said that the problems described are the same in the civilian sector as in the military--they are all "human problems." Dr. Baruch agreed that it is not exclusively a military problem; he has taught the management of technological change in business schools for the past seven years. Dr. Walker commented that in academia it is to a large extent a generational problem--the decision makers (deans, chancellors) have little knowledge of the uses of information technology. John Gage said that the devices that in the eighties switched the world from mainframes to PCs (from "multi-board to single board") are now going from single board to single chip. Chips are going from 16 million transistors to 50 million 18 months from now. They are smaller, cheaper, and faster. We are now moving to a distributed architecture where things find each other and interoperate securely--and this is largely being driven by military applications. As video chips become ubiquitous (from this Board Room to elevators to ATM machines) there will be important privacy issues to be faced by society.

XIII. RESOLUTION ON THE RETIREMENT OF HAROLD M. SCHOOLMAN, M.D.

The Board of Regents approved unanimously a resolution honoring Harold M. Schoolman, M.D., NLM Deputy Director for Research and Education, on long his distinguished Federal service and wishing him well in his retirement. The resolution is in Appendix A.

XIV. REPORT OF THE NOMINATING COMMITTEE

Wendy Carter, reporting on behalf of Dr. James Zimble for the Nominating Committee appointed at the last meeting, placed in nomination the name of Dr. Enriqueta Bond for the Chair of the Board of Regents. She was unanimously elected.

XV. VISIBLE HUMAN PROJECT: FROM DATA TO KNOWLEDGE

Dr. Lindberg said that the Visible Human Project has been a big success. NLM is now undertaking a joint project with the National Institute of Dental and Craniofacial Research (NIDCR), the National Eye Institute, the National Institute on Deafness and Other Communication Disorders, the National Cancer Institute, and the National Science Foundation to focus on Visible Human data of the head and neck. Dr. Lindberg said that we will describe the joint program in more detail and then seek the Board's approval of the concept. Following this, Dr. Michael Ackerman, Head of the Lister Hill Center's Office of High Performance Computing and Communications and project officer for the Visible Human Project, briefly recounted the evolution of the Visible Human Project, which had its beginnings in the Regents Long Range Plan on Electronic Imaging. The panel that created that plan was chaired by Dr. Donald King. The panel's report recommended not only that the NLM undertake the Visible Human Project, but that the NLM should "support a follow-on research effort to develop methods, tools, and standards for classification of anatomic image data for the Visible Human Project so that applications may be developed that can extract, manipulate, and display image subsets on the basis of organs, tissues, body systems, and biological function." The 1989 report also says that NLM should support research that represents and links spatial and textual information, and introduce computer-reconstructed anatomical imaging technologies into the health professions and curricula nationwide. The Visible Human data became available in 1994 (male data) and 1995 (female data) and are being used by researchers and applications designers around the world. The NIDCR got in touch with Dr. Ackerman last year about the possibility of developing a head and neck atlas based on the VH dataset. Are the data good enough for this? A panel of experts said that the dataset is good enough for most uses, but not for many of the fine structures that head and neck surgeons need to see. They recommended that NLM first use the present VH dataset to construct a head and neck atlas that would be multimedia in nature--pictures, motion, sound, signals. Concurrent with this, there should be a research effort, using the data from the male, to overcome the "anatomical-histological-pathological" problems. Dr. Ackerman presented a model concept that showed how head and neck data on the Web (1-mm data from the male) could be augmented with more detailed data from, for example, the National Eye Institute, when the user "clicked on the eye." The present data would become a "metaphor for navigation" that would provide access to new and more detailed data on a completely different scale--even down to molecular anatomy. The implementation of this model concept is articulated in a formal statement brought before the Board of Regents for review and approval.

Following Dr. Ackerman's presentation, Dr. Don King, who chaired the 1989 panel that originally recommended the Visible Human Project, commented that the NIDCR/NLM review of the datasets noted several weaknesses in the data: difficulty in seeing nerves and smaller structures, some brain distortion, blue gel residue, and a lack of contrast. Nevertheless they concluded that the Visible Human dataset was an excellent tool for teaching sectional anatomy and that the data should be segmented into sections of the body where they could be reworked and enlarged and multimedia modalities applied. The power of the database lies in the power to reconstruct virtual images.

Dr. King said he endorses the proposed concept statement as presented by Dr. Ackerman. He considers the part of the statement pertaining to tool kits development as the most important and he hopes the NLM will publicize what is learned at a research symposium in about three years. After the discussion, the Regents voted unanimously to approve the following statement:

The National Library of Medicine in partnership with the National Institute of Dental and Craniofacial Research, the National Eye Institute, the National Institute on Deafness and Other Communication Disorders, and the National Science Foundation, is sponsoring a new program under the Visible Human Project. The program has three parts: 1) the development of a Visible Human Atlas of the Head and Neck; 2) the development of methods to eliminate anatomical artifacts in the data, e.g., herniations and tissue swelling; and 3) the development of a tool kit of computational plug-ins capable of automatically performing many of the basic data handling functions required for using Visible Human data in applications, e.g., segmentation and alignment.

XVI. ADJOURNMENT

The Board of Regents adjourned at noon.

ACTIONS TAKEN BY THE BOARD OF REGENTS:

.The Board of Regents approved the statement of goals and objectives of NLM's initiative to improve the puboic's access to health information as revised by the BOR Planning Subcommittee.

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

The Board of Regents unanimously passed a resolution of appreciation recognizing

Dr. Harold Schoolman

The Board of Regents approved the concept statement for the new Visible Human Project: From Data to Knowledge.

ATTACHMENTS:

Roster - NLM Board of Regents

May 3, 1999 Planning Subcommittee Meeting

May 4, 1999 Subcommittee on Outreach and Public Information Meeting

May 4, 1999 Extramural Programs Subcommittee Meeting

Resolution of Appreciation Recognizing Dr. Harold Schoolman

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

Tenley Albright, M.D.

Chair, NLM Board of Regents

Board of Regents

Extramural Programs Subcommittee Meeting

May 4, 1999

12:15-1:30 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.

Subcommittee Member Absent:

Enriqueta Bond, Ph.D.

James Zimble, M.D.

NLM Staff Present:

Milton Corn, M.D.

Peter Clepper

Sharee Pepper, Ph.D.

Board of Regents

Subcommittee on Outreach and Public Information

May 4, 1999

7:45 - 9:00 a.m.

Subcommittee Members Present:

Tenley Albright, M.D., Chair

Marion Ball, E.D.

Henry Foster, M.D.

John Gage

Steven Phillips, M.D.

Klaus Schafer, M.D.

Subcommittee Members Absent:

Lois DeBakey, Ph.D.

NLM Staff Present:

Liza Chan

Becky Cagle

Kathleen Gardner Cravedi

Judy Folkenberg

Robert Mehnert

Elliot Siegel, Ph.D.

Eleanor Pomeroy

Fred Wood

Julia Royall

Kent Smith

Board of Regents

Planning Subcommittee

May 4, 1999

3:00 - 5:00 p.m.

Subcommittee Members Present:

Dr. Enriqueta Bond, Chair

Dr. Tenley Albright

Ms. Michele Klein

Dr. Steven Phillips

Dr. Kenneth Walker

Subcommittee Members Absent:

Lois DeBakey, Ph.D.

NLM Staff Present:

Liza Chan

Becky Cagle

Kathleen Gardner Cravedi

Judy Folkenberg

Robert Mehnert

Elliot Siegel, Ph.D.

Eleanor Pomeroy

Fred Wood

Julia Royal

Kent Smith


Attachment I

NLM and HEALTH INFORMATION FOR THE PUBLIC

PURPOSE

NLM's goal is to improve the national infrastructure that supports the public's access to electronic health information. This infrastructure includes the intellectual organization, information technology, inter-institutional arrangements, and training that will be needed to ensure that all people in the U.S. have a known, accessible, understandable, and affordable source of current, authoritative health information.

AUDIENCE

NLM's efforts are targeted toward members of the public, health professionals seeking information for individual patients or whole communities, librarians and other health information providers, and health educators. NLM works with a variety of intermediaries, including family members, health care providers, public health professionals, librarians, educators and community-based organizations to reach those who lack direct access to electronic health information.

PRIORITIES

Organize selected authoritative electronic information that is available at low or no-cost, with an emphasis on science-based, nationally applicable resources.

Develop easy-to-use access and delivery mechanisms that promote the public's understanding of health information, drawing on research in lay terminology, graphical and multimedia presentation, etc.

Publicize reputable electronic health information services, including those available from NLM and other sources.

Assist those providing health information to the public to make effective use of electronic services through Internet connections, training, and other means, with an emphasis on those serving minority groups, low income populations, seniors.

Promote integration of NLM services with other electronic services covering regional, state, or local health information.

Refer members of the public to regional, state, and local sources of reference assistance and document delivery and continue to serve as the national backup.

Conduct and support research, development, and evaluation on the public's health information needs, information seeking behaviors and learning styles, information systems that meet the public's needs, and the impact of access to information.

EXCLUSIONS

will not provide personal medical or health advice to individuals

will not lead disease prevention or health promotion campaigns

will not write new information content, but will bring gaps to the attention of NIH

will not expand its acquisition and cataloging of print materials written for the general public, but will continue to acquire selected high quality print items


Attachment II

Resolution of Appreciation for
Harold M. Schoolman, M.D. Deputy Director for Research and Education

Adopted by the Board of Regents of the National Library of Medicine
May 4, 1999

WHEREAS Harold M. Schoolman, Deputy Director for Research and Education of the National Library of Medicine, has served the Nation for 32 years, first at the Department of Veterans Affairs as Assistant to the Director for Medical Program Development and Evaluation and, since 1970, at the National Library of Medicine;

WHEREAS Harold M. Schoolman, as NLM Deputy Director for Research and Education, has been an administrator nonpareil of all the Library's research and education activities, and upon occasion has served as the Acting Director of the Lister Hill National Center for Biomedical Communications;

WHEREAS Harold M. Schoolman provided distinguished service s Acting Director of the National Library of Medicine in 1983-1984, ably maintaining the Library's programs and bolstering the morale of the staff;

WHEREAS Harold M. Schoolman has been recognized as an expert on many controversial issues facing the National Library of Medicine, not the lease of these being copyright as applied to health information, licensing of NLM's databases and federal regulation of medical software, and is admired as a thoughtful and articulate champion of the Library's position;

WHEREAS Harold M. Schoolman has played a key role in the development of important NLM programs including the National Network of Libraries of Medicine, the acquisition and organization of non-print educational media, internal NLM research on information retrieval, and the Unified Medical Language System.

WHEREAS Harold M. Schoolman, who has in the past been honored as "Alumnus of the Year for Service to the Government" from the University of Illinois, has also received numerous Federal commendations, including the NLM and NIH Directors' Awards and the Superior Service Honor Award from the Department of Health and Human Services, and is a member of many scientific and medical associations, including the American College of Medical Informatics;

WHEREAS Harold M. Schoolman, has been a valued colleague of many in the health community and a good friend to his admiring co-works to whom he was know affectionately as "Hack";

BE IT RESOLVED that the Board of Regents of the National Library of Medicine, expresses the utmost appreciation to Harold M. Schoolman for his outstanding services to the NLM, the medical library community, and to the entire Nation, and wishes him fulfillment and happiness in his well-earned retirement.