Minutes of the Board of Regents - May 2001
DEPARTMENT OF HEALTH AND HUMAN SERVICES
NATIONAL INSTITUTES OF HEALTH
NATIONAL LIBRARY OF MEDICINE
MINUTES OF THE BOARD OF REGENTS
May 22-23, 2001
The 127th meeting of the Board of Regents was convened on May 22, 2001, 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 4:30 p.m., followed by the closed session for consideration of grant applications until 5:00 p.m. On May 23, the meeting was reopened to the public from 9:00 a.m. until adjournment at 12:08 p.m.
- Dr. Jordan Baruch
- Ms. Alison Bunting
- Dr. Henry Foster [Chair]
- Ms. Michele Klein Fedyshin
- Dr. Joshua Lederberg
- Dr. Ralph Linsker
- Dr. Joseph Newhouse
- Dr. Herbert Pardes
- Ms. Eugenie Prime
- Gov. Lowell Weicker
EX OFFICIO AND ALTERNATE MEMBERS PRESENT
- Dr. Richards Adrion, National Science Foundation
- Ms. Pamela Andre, U.S. Department of Agriculture
- Colonel Kristen Raines, U.S. Army
- Mr. Winston Tabb, Library of Congress
- Ms. Mary Ann Tatman, U.S. Department of Veterans Affairs
- Brigadier General Klaus Schafer, U.S. Air Force
- Dr. Vernon Schinski, Uniformed Services University of the Health Sciences
- Dr. Craig Vanderwagen, U.S. Public Health Service
- Captain David Wade, U.S. Navy
CONSULTANTS TO THE BOR PRESENT
- Dr. Tenley Albright, Harvard Medical School
- Dr. Marion Ball, Johns Hopkins School of Nursing and Healthlink
- Dr. Kenneth Walker, Emory University School of Medicine
MEMBERS OF THE PUBLIC PRESENT:
- Dr. Charles Flowers, Jr., Charles R. Drew University of Medicine & Science
- Dr. Veronica Jenkins, Family and Medical Counseling
- Dr. Michael Kienzle, University of Iowa College of Medicine
- Ms. Sara Paulk, Tifton-Tift County Public Library
- Ms. Karyn Pomerantz, George Washington University
- Ms. Haimi Shifevaw, 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. Michael Ackerman, Asst. Dir. for High Performance Communications & Computing, NLM
- Ms. Suzanne Aubuchon, Office of the Director, NLM
- Dr. Carol Bean, Division of Extramural Programs, NLM
- Mr. John Butler, Office of Computer & Communications Systems, NLM
- Ms. Susan Buyer, Office of Health Information Program Development, NLM
- Ms. Annmarie Carr, Division of Extramural Programs, NLM
- Dr. Clifford Clausen, Information Engineering Branch, NLM
- Dr. Milton Corn, Associate Director for Extramural Programs, NLM
- Ms. Kathleen Cravedi, Office of Communication and Public Liaison, NLM
- Dr. Eva Czabarka, Computational Biology Branch, NLM
- Mr. Laurence Dash, Division of Extramural Programs, NLM
- Mr. Jason Donaldson, Office of the Executive Officer, NLM
- Ms. Gale Dutcher, Division of Specialized Information Services, NLM
- Dr. Elizabeth Fee, Chief, History of Medicine Division, NLM
- Dr. Valerie Florance, Division of Extramural Programs, NLM
- Ms. Jane Bortnick Griffith, Assistant Director for Policy & Legislative Development, NLM
- Ms. Betsy Humphreys, Associate Director for Library Operations, NLM
- Ms. Christine Ireland, Division of Extramural Programs, NLM
- Dr. Laurence Kingsland, III, Assistant Director for Applied Informatics, NLM
- Dr. Ruth Kirschstein, Director, NIH
- Ms. Eve-Marie Lacroix, Division of Library Operations, NLM
- Dr. Oliver Lespinet, Computational Biology Branch, NLM
- Dr. Simon Liu, Director, Office of Computer and Communications Systems, NLM
- Ms. Becky Lyon, Deputy Associate Director for Library Operations, NLM
- Dr. Alexa McCray, Director, Lister Hill National Center for Biomedical Communications, NLM
- Mr. Robert Mehnert, Director, Office of Communication and Public Liaison, NLM
- Mr. Dwight Mowery, Division of Extramural Programs, NLM
- Ms. Carol Myers, Information Engineering Branch, NLM
- Mr. David Nash, Office of Equal Opportunity, NLM
- Dr. Darren Natale, Computational Biology Branch, NLM
- Mr. Donald Poppke, Executive Officer, NLM
- Ms. Rita Richey, Division of Extramural Programs, NLM
- Dr. Merlyn Rodrigues, Division of Extramural Programs, NLM
- Dr. Angela B. Ruffin, Division of Library Operations, NLM
- Ms. Mary Smith, Office of Administrative Management Services, NLM
- Ms. Martha Szczur, Division of Specialized Information Services, NLM
- Dr. Elliot Siegel, Associate Director for Health Information Program Development, NLM
- Dr. Yoshimi Toda, Computational Biology Branch, NLM
- Dr. Richard Von Sternberg, Computational Biology Branch, NLM
- Dr. Fred Wood, Office of Health Information Program Development, NLM
I. OPENING REMARKS
Board Chair Dr. Henry Foster welcomed the Regents, alternates, and guests to the 127th meeting of the Board of Regents of the National Library of Medicine. The Chairman noted especially the presence of consultants Dr. Marion Ball, Dr. Tenley Albright, and Dr. Kenneth Walker.
II. REPORT FROM THE OFFICE OF THE SURGEON GENERAL, PHS
Assistant Surgeon General Craig Vanderwagen, representing Surgeon General David Satcher, said that the S.G. recently released a report on women and smoking. Secretary Thompson was a strong supporter of the report. The staff preparing it worked closely with NLM to ensure that all bibliographic aspects of the report were correct. A national suicide prevention "call to action" has also been released by the Surgeon General, in keeping with Dr. Satcher's strong emphasis on mental health issues. A report on minorities and mental health is in preparation, as is a report on the role of primary care in mental health. Dr. Vanderwagen, who is the Chief Medical Officer and Director of Clinical Preventive Services for the Indian Health Service, said that they rely heavily on access to information, especially NLM's services, to ensure that high quality health care is delivered to those in isolated circumstances.
Following the Assistant Surgeon General's report, Dr. Foster commented that Dr. Satcher who is trained as both a clinician and a scientist, has done a superb job. The report on women and smoking is the most far-reaching Surgeon General's report since Surgeon General Luther Terry's original report on smoking and health in the 1960s. Lung cancer kills more American women than breast cancer or HIV/AIDS, Dr. Foster said, so this new report is important. Using the military services as an example, there was a discussion of how peer pressure contributes to smoking; on the other hand, some peer assistance programs on Indian reservations show promise in reducing suicide and substance abuse.
III. REPORT FROM THE ACTING DIRECTOR, NIH
Dr. Ruth Kirschstein, Acting NIH Director, said there is a different process in the House this year in approaching the President's appropriation proposal. The NIH Institutes and Centers are no longer being individually considered by the Congress; Dr. Kirschstein testified on behalf of the agency as a whole. However, there were several "theme" hearings, one of which was "infrastructure," at which Dr. Lindberg testified about the role of communications in the biomedical infrastructure. The new NIH database, ClinicalTrials.gov, created by the NLM, was of particular interest to the Congress. NIH received a large increase of 13.5% ($2.8 billion) in the FY 2002 budget. The total 2002 NIH President's budget is $20.03 billion. Dr. Kirschstein reported on a recent successful visit by Secretary Thompson to the NIH. The Secretary is well disposed to the NIH and he will spend a week here this summer. Dr. Kirschstein announced that the NIH Director's Advisory Committee would meet on June 7; one highlight will be a presentation by Eric Lander on the achievement of the international consortium that is working on the draft sequence of the human genome. She also said that there is a great deal of activity at the Departmental level related to the protection of human subjects in medical research. In answer to a question about the pace of confirmations for political appointees, Dr. Kirschstein said that there has been no action yet on a number of high-level positions, including Assistant Secretary for Health and the Director of the Office of Science and Technology Policy.
IV. CONSIDERATION OF MINUTES OF PREVIOUS MEETING
The Regents approved without change the minutes from the February 27-28, 2001 meeting.
V. REPORT OF THE NLM DIRECTOR
Dr. Lindberg said that the FY 2002 President's budget for NLM is $275.7 million, an increase of almost 12% over 2001. Although much of the increase will go to NLM's National Center for Biotechnology Information and to special initiatives such as outreach and consumer health, the single biggest piece goes for basic library services protecting the integrity of the collections.
Dr. Lindberg introduced to the Board new staff member Christine Ireland (Committee Management Specialist). A Public Health Outreach Forum was held at NLM on April 4-5 that included representatives from NLM-funded outreach projects directed to public health professionals, staff from each Regional Medical Library, and representatives of other public health organizations. Betsy Humphreys said that a report is being prepared for publication, but we did learn that public health agencies have little information or library support. One recommendation that arose was to institute a phased approach to support network libraries to "begin the conversation" with the public health people to identify where useful help can be offered.
Dr. Lindberg announced that the Library will cease publishing the Cumulated Index Medicus with the 2000 edition (the monthly Index Medicus will not be affected). Sales from the Government Printing Office have declined dramatically in recent years, largely because of the free availability of the same information in the MEDLINE database. The FY 2002 schedule of NLM exhibits was presented to the Board and the Regents were invited to suggest additions, especially if it is possible for the Library to be on the conference program.
The NLM Director announced that new 5-year contracts have been awarded to the eight Regional Medical Libraries that together manage the National Network of Libraries of Medicine (NNLM). He said that two of the RMLs are new: the Spencer S. Eccles Health Sciences Library at the University of Utah for the Midcontinental Region and the Lamar Souter Library at the University of Massachusetts Medical School for the New England Region. Dr. Lindberg turned the attention of the Regents to the note cards at their place. They depict herbs and medicinal plants that are the subject of a fascinating new graphic display at NLM: "Turning the Pages." This is the first U.S. showing of a program developed by the British Library that uses computer animation, high-quality digitized images, and touch-screen technology to make an 18th century book (Elizabeth Blackwell's Curious Herbal) available for electronic browsing. He showed a brief video from the exhibit opening and the Regents will be given the opportunity to see it over the lunch hour.
The last subject covered by the NLM Director was legislation. Dr. Lindberg gave a brief update on the Health Insurance Portability and Accounting Act of 1996, a subject the Regents have heard about previously. The new Administration is on record as saying it will be implemented. On the topic of intellectual property issues, he raised the subject of "fair use," a concept familiar to U.S. and English librarians but not to those in other countries. No database protection legislation has yet been introduced in this session of Congress. Jane Griffith, NLM Assistant Director for Policy and Legislative Development, added that HHS will soon be issuing guidance to help those who are required to implement the privacy rules. Some changes in the regulations will probably be made over the coming year. Dr. Pardes said that the Secretary should be commended for "bringing some reality" to the issue of privacy and confidentiality by seriously considering the need for modifying the present regulations. Ms. Griffith mentioned that the Senate has moved on a bill that would make it legal to transmit certain material in "distance education," much as a classroom instructor would do for students in a classroom. This would provide an impetus for librarians to play an increasing role in distance education.
VI. PRESENTATION OF AWARDS
Dr. Foster presented the 2001 Frank B. Rogers Award to John R. Butler of the of the Office of Computer and Communications Systems for "his technical achievement in software development that has substantially improved NLM's processing of bibliographic materials."
Dr. Lindberg presented two 2001 NLM Directors Honor Awards: to Becky Lyon, Deputy Associate Director for Library Operations, for "sustained contributions for development and enhancement of NLM's outreach program," and to Robert Mehnert for "his intellectual contributions linking the National Library of Medicine to the press and public and his graceful navigation of the Office of Communications and Public Liaison into new territory."
Dr. Lindberg also presented inscribed books of writings by John Shaw Billings (NLM's first director) to retiring appointed Regents Dr. Jordan Baruch, Michele Klein Fedyshin, and to retiring ex-officio member Pamela Andre.
VII. NOMINATING COMMITTEE
After Dr. Henry Foster absented himself, Colonel Kristen Raines reported that the committee to recommend a Board of Regents Chair for 2001-2002 wished to place in nomination Dr. Foster's name for a second term. The Board voted unanimously to elect Dr. Foster.
VIII. REPORT OF TELEMEDICINE SYMPOSIUM
Dr. Michael Ackerman, Assistant NLM Director for High Performance Computing and Communications, briefed the Regents on the 4-year-old NLM telemedicine program. He emphasized that NLM's interest in telemedicine is in the information-intensive aspects of it, that is, the use of information mediated by telecommunications and computers to support medical decision-making. NLM's Telemedicine Program began with a "request for proposals" issued in 1996; 19 multi-year awards ($42 million total) were made in October of that year. The purpose was to evaluate the impact of telemedicine on health care costs, quality, and access. In March 2001, NLM invited the contractors to a symposium at NIH to discuss what had been learned. The projects reported on spanned a broad spectrum, ranging from emergency medical support to access to the electronic record, patient monitoring data, high-risk newborns, etc. Dr. Ackerman briefly discussed some of the unanticipated social and economic barriers encountered by the project investigators. There is a lack of equipment and telecommunication standards in telemedicine. One conclusion was that patient demand will have to be one of the main driving forces for the adoption of telemedicine, otherwise the existing impediments in the marketplace will keep it at arm's length. There is too often no business plan to continue a project after government support ends. In general patients were satisfied with their medical encounters via telemedicine. On the other hand, providers perceived telemedicine patient encounters as longer and more tedious (although the researchers said that sessions were actually shorter, but more intense). The results of the symposium (contractor reports, Power Point graphics) are being put on a CD-ROM, a current draft of which is available on NLM's web site. Dr. Ackerman then introduced two of the researchers who presented their results at the telemedicine symposium: Dr. Michael Kienzle of the University of Iowa and Dr. Charles Flowers, Jr. of the Charles R. Drew University of Medicine and Science.
Dr. Kienzle reported on the "Video Consultation for Children with Special Needs" telemedicine project at the College of Medicine of the University of Iowa. The communications infrastructure was in place for this project since the state of Iowa has a fiberoptic backbone network that connects all 99 counties. The children in the study have many kinds of chronic and acute medical needs and require many kinds of care providers in their communities, schools, and at tertiary referral centers. Their special needs means that transportation is a challenge for some. The focal point of the project was the University Hospital School's Center for Disabilities and Development, with both inpatient and outpatient services for children and adults. Organization was a major challenge: partners included the Southern Prairie Education Agency, the Ottumwa Regional Health Center, and a network of child care specialty clinics. The care that is provided to the children is inherently team-based physicians, nurses, psychologists, etc. The project had both strategic goals (reduce travel, save time, enhance coordination) and clinical goals (offer real time video consultation, evaluate efficacy and satisfaction, and create a replicable model for rural care of this patient population). Dr. Kienzle described the four patient cohorts. The study proposed to achieve 100 teleconsultations for evaluation; in fact more than 300 were accomplished. There was a traditional control group. Evaluation was done independently. As it turned out, the teleconsultation system was endorsed by parents, providers, and children. Ease of community coordination, proximity of the studios for professionals, pre-existing perceptions by the providers, complexity of the cases (the more complex, the more acceptance), timeliness of the consult, and technical reliability were among the success factors in the study. The bottom line: (1) videoconsultation improves the care process by facilitating simultaneous, real-time team-based consultation; (2) for patients, families, and providers see the process is as at least as good as face-to-face clinical experience; and (3) there were significant financial savings for travel expenses for the families and care giver teams $125 per session for the families, almost $1,000 per case for the care giver teams. What's next? Dr. Kienzle said the investigators would like to extend the teleconsultation concept into the school, home, and doctor's office, and with adults as well as children.
Dr. Flowers, an ophthalmologist, presented his project, "Telemedicine for Diabetic Retinopathy Screening," aimed at serving inner city residents in the Los Angeles area. There is a large patient base and inadequate health care facilities to serve them. There are bottlenecks in the system patients have to wait 6 to 9 months for specialty care. This led to patients developing preventable eye diseases and blindness, conditions that could be treated if caught in time. Dr. Flowers and his colleague decided to concentrate on one disease, diabetic retinopathy. The patient cohort was Type I and Type II diabetics over the age of 18 (the mean age was 49). Telemedicine linkages were established between three remote community eye clinics and the University that allowed high quality images of the eye to be transmitted by staff trained in photographic techniques, viewed by the physician, and stored. Dr. Flowers used graphics to show how the workflow was integrated and he displayed actual examples of some of the eye images. He described in some detail how sensitive and specific the system was in looking at various manifestations of eye disease. The conclusion of the investigators is that telemedicine is definitely a viable strategy for screening. Patients with diabetic retinopathy were diagnosed earlier, allowing earlier intervention and thus preventing blindness. However, the system cannot be used for in-depth diagnoses; it is a tool for screening only.
Following these presentations, General Klaus Schafer said the NLM can take credit for making the decision to become involved in telemedicine and making the 19 multi-year awards back in 1996. With the 2001 symposium, NLM has brought academic rigor to a subject that many are experimenting with, too often without a business case aspect. He said that the two models discussed today in urban and rural settings have both had significant social impact on patients. Dr. Foster said that it was no shortcoming that the Los Angeles project was useful not for diagnosis but for screening only: that's what is really needed. Dr. Newhouse asked whether private insurers or Medicaid reimbursed the investigators. Dr. Flowers said that in California, Medi-Cal and private insurers will reimburse for real-time encounters via telemedicine. In Iowa, Dr. Kienzle said, they did not charge for the consultations in the context of the trial. Ms. Klein Fedyshin asked whether the parents in Iowa had an increased involvement with the medical records of their children as a result of their participating in the telemedicine project. Dr. Kienzle said this was not apparent concerning medical records, but there was a fundamental shift in the role of the parents, who were present during the entire presentation and discussion of their child's care. Questions and issues were discussed and dealt with immediately.
IX. "ONCE AND FUTURE WEB" EXHIBIT
Dr. Elizabeth Fee, Chief of the History of Medicine Division, said that the Division not only has the responsibility of maintaining and building the historical collections, but also to make the collections available. For example, there are a variety of innovative Web-based formats of historical medical information. One way to reach out to new audiences, she said, is through an active exhibition program that translates and interprets scholarly and other historical materials and makes them accessible to the public. NLM has a core exhibition staff in the History of Medicine Division, but we also use contractor and consultant assistance. In the future we hope to have more permanent staff members permanently assigned to this task. The base for the new exhibition, "The Once and Future Web," is Thomas Standage's book, Victorian Internet. The opening of the exhibition was last night, there will soon be an online exhibition on the Web, a catalog, and eventually a traveling exhibition. Dr. Fee showed a brief video introduction to "The Once and Future Web," after which she conducted the Regents through the exhibition.
X. EXTRAMURAL PROGRAMS
Dr. Milton Corn, NLM Associate Director for Extramural Programs, presented the rationale for the authorization of the NLM Director's set-aside of grant funds as it is used in other Institutes at NIH. He requested approval by the Board for a standing authorization of a 15% set-aside of available grant funds in all program categories to be used at discretion of Director, NLM, to fund grant applications with high program relevance that were beyond the "payline." An applications could be considered to have high program relevance if it: fills gaps in grant portfolio; fosters new investigators; supports an innovative approach; increases diversity of principal investigators; is a high-risk, high-payoff proposal; is a topic highly important to NLM; maintains important on-going work; or supports a project with easily corrected deficiencies. Set-aside funds not used by Director are to be returned to the pool of available funds for funding of candidate applications in priority score order. It is understood that the set-aside authorization does not alter the Director's rights as defined by NIH, including authority to withhold payment of any application considered to fall outside of the NLM mission, or for reasons of budget management. After discussion, the Board voted in favor of the requested authorization, with one against, and no abstentions.
Dr. Corn touched on several other matters. He described the establishment, domain, and interim administration of the new National Institute of Biomedical Imaging and Bioengineering (NIBIB). He noted that the Board of Regents was responsible for supporting the "foster" grant system in place until NIBIB begins its own operations. He also presented the results of the first round of competition for NIH's Planning Grants for National Programs of Excellence in Biomedical Computing (BISTI). Four of the applications included participation by faculty from NLM's Informatics Training programs (Columbia, Missouri, Stanford, and Yale). All scored well, and three of them ranked 2,3,4 among the priority scores awarded to a set of 25 applications.
Dr. Corn requested the Board's action on the appeal of Dr. Plinio Prioreschi of Review of Grant Application 1 R01 LM06939-01A1. This appeal of the judgment of the initial review group was presented to Board at request of Dr. Prioreschi after his appeal was rejected at the first level of review by NLM's appeals officer. The appeal was discussed by the Board Extramural Programs Subcommittee (with addition of Regents' Chair, Dr. Henry Foster). Documents provided for consideration included the application, summary statement, two rebuttal letters by Dr. Prioreschi, the judgment letter by the appeals officer, and comments by staff. Dr. Foster presented the results of the subcommittee's discussion to the full Board. After discussion, the Board voted unanimously to uphold the action of the review group, thus rejecting the appeal.
XI. REPORT ON NN/LM OUTREACH PROJECTS
Dr. Angela Ruffin, Head of the National Network Office, said that, following a public library pilot project in 1998, NLM has encouraged funding for community and medical library partnerships as a way to improve the public's access to health information. NLM solicited the members of the National Network of Libraries of Medicine to develop projects that would connect both health professionals and the general public to the health information resources they need to make informed decisions. They were encouraged to develop proposals that would include as partners public, school, and state libraries, health information resource centers, voluntary health agencies, and community-based organizations. Seventy-five proposals were received; NLM was able to fund 53. Dr. Ruffin introduced the principal investigator for one of these projects, Ms. Karyn Pomerantz of the George Washington University School of Public Health. She manages the School's Distance Education Program and is also a staff member of the Himmelfarb Health Sciences Library, where she is the User Education Librarian). Ms. Pomerantz is the director of the NLM-funded outreach project known as PARTNERS (Primary Care Access to Resources, Training, Networks, Education and Research Services) for Health Information.
Ms. Pomerantz said that the primary objective of the PARTNERS project is to reduce disparities in access to and use of health information by staff, patients, and clients at some of the "safety net clinics" in Washington, D.C. The project has provided computer equipment, PARTNERS web pages (in English and Spanish), hands-on training, and weekly visits to 11 nonprofit clinics in D.C. With help from student volunteers, they provide a wide variety of services to a diverse population of low-income, uninsured residents primarily Latino and African American: full-text retrieval of reference books and journals is provided to the staff of the clinics; bilingual patient education material; and a clinic listserv to provide communication and updates. Ms. Pomerantz said that the clinics are so different that they require several dissemination models. Among these are "train the trainer" programs, visiting waiting rooms to provide one on one or small group training, and working directly with support groups at the clinics. Within the first year, project staff made 110 visits, working with more than 400 people on site. They conducted five library-based workshops. She is pleased that the project has been extended for another year. With the commitment shown by the students and staff, however, she believes the project would be continued even without additional funding. They learned that the broader social determinants of health also have to be addressed: jobs, housing, exercise programs, locating educational resources, and linking people to advocacy organizations. They learned that it takes longer to start up such a project than anticipated; also it is necessary to "protect" library staff time to accomplish the objectives. Continuing support for equipment and good Internet access is required. Popular topics for their clients are medications, coping, family skills, alternative therapies, jobs, and housing. She said that MEDLINEplus was very useful and she recommends that a Spanish language front page be added to it. The interactive tutorials that have recently been added to MEDLINEplus are very popular and should be expanded. She would like NLM to consider directly funding the community-based organizations themselves.
Ms. Pomerantz then introduced Dr. Veronica Jenkins, the Medical Director at Family and Medical Counseling Service, Ed Robinson, and Charles Williams. Dr. Jenkins said that the Family and Medical Counseling Clinic is in an extremely poor area of the District: the majority of the clinic's patients are high school dropouts, unemployed, HIV-positive. She described "Shirley," a 51-year-old-woman, with many health and other problems, who has used PARTNERS computer resources to gain a great amount confidence and improve her health status. Another patient, "James," has become adept at using the PARTNERS computer for health information and he is a regular teacher of other clients in how to do this. She introduced Mr. Ed Robinson, who started as a client in Dr. Jenkins's clinic and who now is her right-hand helper. Mr. Robinson said that he had absolutely no knowledge of computers when he began with the PARTNERS program, but through training and experience sponsored by Ms. Pomerantz's program, he has become a treatment specialist and now teaches classes on how to use a computer and search the web for health information.
Dr. Ruffin introduced Ms. Sara Paulk, who is the Coastal Plain Regional Library Assistant, Director of Public Services, and the head librarian at the Tifton-Tift County Public Library in rural south Georgia. Ms. Paulk wrote on the first page of her grant application: "we want to take the Internet out of the building and into the community. We want to reach and teach adults the amazing MEDLINE resources available on the Internet in such nontraditional locations as churches, service centers, health clinics and other community centers." Ms. Paulk said that with the support of the NLM grant they did, in fact, take MEDLINEplus out of the library and into the community. Using wireless technology, in 9 months the Tifton-Tift staff (0.25 FTE) presented 39 programs with more than 400 attendees. Most of the programs were on the weekends and in the evening outside the traditional library hours. Among the barriers they faced in the community were literacy English, Spanish, and computer. Grant funds were used to buy a lap-top computer, a computer projector, and a cell phone. The modem in the lap-top was connected to the cell phone, which dialed back to the Internet Service Provider, which connected to MEDLINEplus for a live demonstration. The largest group of demonstration sites was the churches. They also made presentations in community rooms in public housing complexes, public health clinics, hospitals, senior citizen groups, a homeless shelter, and a soup kitchen. The aim of the grant was to reach lower socioeconomic groups, so they did not demonstrate at service clubs such as Rotary, Kiwanis, and Lions. There was wide publicity, including radio, TV, local magazines, church bulletins, posters, flyers in laundromats and convenience stores, and newspaper public service announcements. All print materials were translated into Spanish, and there were Spanish interpreters during the presentations. Ms. Paulk said that NLM was "making a difference" and she thanked the Library on behalf of her community.
Following these presentations, Alison Bunting praised these two projects as wonderful examples of how a library can get out into the community to bring good health information to the public. It is important for us to hear back from consumers and patients on how the NLM services can be improved, and what topics are missing. Dr. Steven Phillips suggested it might be helpful for such projects to partner with local medical societies. Dr. Walker asked about plans to continue and expand these programs. Kent Smith said that there is an evaluation component in the projects, and when they all are completed, NLM will review the range of experiences and decide on next steps. What we have heard this morning is certainly very encouraging, he said. Dr. Foster concluded the discussion by saying that we hear much about the "digital divide"; these projects certainly represent successful steps to deal with it.
XII. REPORT ON THE PUBMED CENTRAL ADVISORY COMMITTEE
Dr. David Lipman, Director of NLM's National Center for Biotechnology Information, introduced to the Regents several scientists on the Center's staff: Carol Myers, Eva Czabarka, Ph.D., Darren A. Natale, Ph.D., Yoshimi Toda, Ph.D., Olivier Lespinet, Ph.D., Richard M. von Sternberg, Ph.D., and Clifford O. Clausen, Ph.D. Following the introductions, Dr. Joshua Lederberg, who chairs the PubMed Central National Advisory Committee, said that the purpose of PubMed Central is to try to provide access to scientific information in a way that is as goal-directed as the production of the knowledge. NIH supports the overwhelming majority of biomedical research in the U.S. and the resulting knowledge is an important element of the common good. It is implicit in the scientific process that the knowledge be widely shared. Private and not-for-profit publishers, who are an indispensable part of this process, end up owning the knowledge itself. It is sometimes frustrating for a scientist to try find to find a certain article that is crucial to the work he or she is doing. PubMed Central will try to overcome that problem by providing effective access to scientific knowledge via new online journals and by transitioning existing journals so their contents are also available online. There are many parties and many divergent interests in the process. One role model is the National Academy of Sciences which has put its proceedings on PubMed Central. Dr. Lederberg sees his role as chair of the advisory committee as one of trying to mediate the conflicting interests while people get used to the idea of using the electronic media in this way. He said the committee did its best to work out compromises for the transition stage, for example, instead of publishers submitting their electronic data to PubMed Central 6 months after publication, and possibly cutting into their revenue stream, the period would be extended to 12 months.
Ms. Prime asked whether the increasing participation (to 27 journals) reflected more publisher participation or more titles from existing publishers. Dr. Lipman said that it is both additional small society publishers and additional titles from those currently participating. He emphasized the archival aspects of PubMed Central. There currently exists no permanent archive of the increasing number of electronically published articles (with their sometimes extensive associated files of data that don't appear with the printed version). PubMed Central would represent such a permanent archive. Dr. Lipman said that PubMed Central could point a user to a publisher's web site for the free text of an electronic article, but it is crucial that an archival copy be held in PubMed Central. This would provide both access (on the publisher's site) and permanent archiving. If the publisher ceases, for whatever reason, to provide users with free access to the text, then PubMed Central would. There are at present three camps: commercial publishers who favor the status quo (traditional approach); society publishers who don't depend on revenue from their journal tend to favor the PubMed Central free-text approach; and society publishers who depend on revenue from their journals do not like the PubMed Central approach because it closes off potential revenue streams. About 23,000 scientists have signed on to a letter from a group called the Public Library of Science that advocates the free and widespread distribution of articles (in various databases at different sites) 6 months after publication.
XIII. OUTREACH AND PUBLIC INFORMATION SUBCOMMITTEE REPORT
Dr. Henry Foster, who chairs the subcommittee, gave a brief overview of yesterday's meeting. The committee heard about recent press releases, news coverage about NLM in the print press, the "Breath of Life" DVD-based exhibit that soon will be traveling, computer training in Central America being supported by NLM in collaboration with the Pan American Health Organization, NLM's HIV-AIDS related outreach projects, and NLM's recent work with NNLM members to bring health information services to the public. A 2-minute clip on the Once and Future Web exhibit, aired last night on a local television station, was shown to the Board. Dr. Phillips briefly described for the Regents the program with PAHO in Central America that is connecting key universities and libraries in Central America to the web and training their staff so that in a natural disaster there will be good communication and good information services available.
XIV. WEB METRICS AND EVALUATION
Dr. Elliot Siegel said that NLM is in the forefront at NIH in evaluating its web sites, including MEDLINEplus. This was evident last month when the Library held a symposium and NLM staff presented to a wide NIH and governmental agency audience the results of our evaluation activities regarding the Internet and the World Wide Web. Dr. Lindberg charged the NLM Web Evaluation Working Group with the task of evaluating our web services. Technical, legal, and ethical restrictions make getting feedback from our users difficult. Because no registration is required to access the NLM web site, we have an essential need to know who our users are. On average, users of MEDLINEplus have linked out to another site and are gone within three mouse clicks. Even measuring the amount of traffic on a site can be difficult. Dr. Siegel introduced the next two presenters, Ms. Becky Lyon, who focused on a newly completed survey of MEDLINEplus, and Dr. Fred Wood who was in charge of the other web evaluation projects undertaken to gather information about how NLM's site ranked compared with other health sites and about the quality of Internet service and connections. Dr. Siegel also commended the National Network of Libraries of Medicine (Pacific Northwest Region) for the recent publication undertaken in collaboration with NLM: "Measuring the Difference: Guide to Planning and Evaluating Health Information Outreach."
Ms. Lyon, Deputy Associate Director for Library Operations, reported briefly on the results of a 22-question online user survey they conducted of MEDLINEplus this past February. They wanted to find out who was using it, how they found out about it, where they used it, in what role were they searching it (patient, provider, etc.), and a team of NLM staff developed and tested the questions. The study was conducted for NLM by CyberDialog. One in five MEDLINEplus visitors between February 14 and 27 were randomly intercepted and invited to participate in the survey. There were 93,852 users intercepted; 2969 (3%) completed the survey. First time users were not asked questions about their use of the site, so that the opinions expressed would be based on actual past experience with MEDLINEplus. Ms. Lyon reported on some of the findings about who was using the site, (in general: female, college graduate, U.S. [72%], English-speaking, with a mean age of 44.7 years), how they found out about it (primarily by search engine, links from other sites), where they were using MEDLINEplus (first time users mostly from home, repeat users 50% out of the home), their role (repeat users more likely to be health care professionals), what is being sought (primarily information on a specific health condition, drug information is also popular), how they used the information, and did they find what they were looking for (86% of repeat visitors always or frequently did). There were open ended questions about what users like most (content, ease of use) and least (difficulty searching, want more content) about MEDLINEplus. Overall, 81% of MEDLINEplus repeat users are "extremely" or "very" satisfied, significantly exceeding the CyberDialog norm of 59%. Ninety-two percent of repeat visitors said they are likely to return. It is gratifying, Ms. Lyon concluded to see that the survey indicate that NLM is on the right track with MEDLINEplus.
Dr. Fred Wood of the NLM Office of Health Information Programs Development gave some highlights of their efforts to: (1) compare NLM's online surveys with web log data, (2) conduct a competitive analysis), (3) measure the Internet audience using outside panels, and (4) evaluate Internet connectivity. Among the findings: MEDLINEplus has high site loyalty; there is high home use; and there is a focus on specific disease conditions. Dr. Wood discussed briefly the question of how they looked into the question of whether non-respondents to the NLM survey are likely to have a substantially different view of the service (the conclusion: not very likely). The comparative analysis of a random sample of 500 of Cyberdialog's 80,000 online panelists showed that, overall, MEDLINEplus fared very well in comparison with the other four sites used for comparison. Dr. Wood showed tables (derived from a company called PCData) that graphed the usage of various government and commercial web sites. NIH's traffic (number three among all Federal sites) is at least half accounted for by NLM web services, and both NIH and NLM traffic data show steady growth over the last two years. He concluded by discussing briefly how we have measured end-to-end Internet connectivity how fast can people download pages, transfer data, or conduct searches. Data comparing 1998 to 2001 show that, in general, there has been moderate improvement in throughput times. For example, the pathway between NLM and the Cornell Medical College in New York City has improved in its median throughput by about 25%.
Following the presentations, Michele Klein Fedyshin commented that the figures Ms. Lyon presented showed a very high impact for the information being presented almost 40% use it in reaching a decision about their health care. She said that the interactive tutorials that have recently been added to MEDLINEplus are excellent for low literacy patients. Dr. Baruch wondered whether it would be possible to have 2-way communication a "chat room" where the library could send information to a user directly. Dr. Walker commented that it is interesting to see the results of these surveys; they demonstrate that MEDLINEplus is maturing very nicely.
The Board of Regents adjourned at 12:08 p.m.
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
Henry Foster, M.D.
Chair, NLM Board of Regents