Consumer health information and the not-for*profit health agency By Margaret Calvano, M.S.L.S. Director, Ltbrary and Information Services
National Multiple Sclerosis Society 205 East 42d Street New York, New York 10017
Driven by increasing consumer demand, not-for-profit health agencies are responding by providing accurate, current information about the disorders they deal with. A case history of the information service at the National Multiple Sclerosis Society and the role of the health sciences librarian in the development of such information centers is described. The librarian, as information provider in the health agency setting, obtains professional advisory support, thus assuring delivery of the most responsible information to the constituency represented by the organization. An overview of the decision-making process for development of such a service is provided, including a description of the Cuadra STAR integrated online system. This system offers an infinite number of databases with immediate access to cross database searching of pertinent internal files and standard library records. A random survey of consumers, based on questioning repeat callers, has indicated an overwhelmingly positive response to this service.
Consumer health information has been, until recent years, a neglected corner in the field of librarianship. This has clearly been the result of the medical profession's historical responsibility for providing adequate information and education to their patients at the individual physician's discretion. The public, however, is now choosing to acquire a more comprehensive knowledge about matters relating to health and disease, and it is incumbent upon health sciences librarians to respond to the public's need.
The public is now choosing to acquire a more comprehensive knowledge about matters relating to health and disease, and it is incumbent upon health sciences librarians to respond to the public's need.
While the physician's responsibility remains, the public, with its ever-increasing knowledge and sophistication in matters related to health and the patient's "right to know," is demanding a more comprehensive reinforcement of education and information on disease-specific topics and preventive health-related matters. Paul Kay suggested that health Bull Med Libr Assoc 79(2) April 1991
sciences librarians should consider themselves a catalyst for patient education and that there should be networking between organizations, health professionals, and librarians [1]. The decade of the '80s has witnessed an enormous increase in patient demand for information about personal health problems. Health professionals, overtaxed by the burden of primary caregiving, the everincreasing responsibilities for administrative record keeping, and the need to devote time to educating themselves in this time of burgeoning medical and technological advances, are beginning to recognize that appropriate patient education support is needed. Who could provide such information in a responsible manner? The role of health sciences librarians is not to educate or advise, but rather to serve as a natural resource for consumer health information. A 1977 editorial in Science stressed that the obligation to preserve one's own health implies a right to expect help with information. This statement suggests a role for libraries, for are not librarians information brokers above all? ... Health information is not really lacking; in fact it abounds. There are voluntary health organizations for every significant disease, each existing for the purpose of giving information and assistance to those afflicted by the disease and their families [2]. 189
Calvano
This statement is only partially correct. Often, notfor-profit agencies prefer to concentrate their funds on the promotion of research or medicosocial services, with information and education relegated to a secondary role. During the '80s the emphasis changed, however, and agencies are now recognizing the public's right to obtain information about personal health matters. To remain viable in the fields of research and services, health agencies must provide excellent information support services as well. The public's new awareness has created information demands that go beyond those that the patient's medical care team can be expected to provide.
During the '80s the emphasis changed, however, and agencies are now recognizing the public's right to obtain information about personal health matters. To remain viable in the fields of research and services, health agencies must provide excellent information support services as well. This paper describes a case history of an agency that was sensitive to its constituency's needs, the factors leading to the development of a sophisticated information center within a not-for-profit health agency, and the decisions affecting implementation of an automated system for effective information service delivery.
HISTORY The National Multiple Sclerosis Society has functioned successfully in the research and medicosocial services arena since 1946, the year of its founding. The provision of information about multiple sclerosis and related issues, however, saw little change between the time of the organization's creation and the beginning of the last decade. In 1982, the national office received 6,000 questions about the disease, its treatment, possible causes, current research, a potential cure, and rehabilitation. The society's medical programs and education staff guided the development or reprinting of general brochures and pamphlets used for information dissemination. Staff solicited assistance from Medical Advisory Board members to answer occasional esoteric questions from either professionals or the public. In 1982, the rising numbers of inquiries resulted in a decision to acquire the full-time services of a health sciences librarian to function as a literature researcher, to acquire pertinent materials, and to develop an appropriate means for disseminating information. Responsibilities included the formulation of 190
replies to the increasingly frequent complex medical inquiries posed by a public with greater sophistication and knowledge of health issues. Prior to 1982, the society's textbook resources were randomly collected, not appropriately classified, and inadequate in coverage. It was also difficult to access a collection of approximately 10,000 reprints classified by a unique numbering system. PROCESS ANALYSIS As early as 1973, D. D. Etzwiler warned that failure to provide adequate health information to patients could be perceived as malpractice [3]. On the other hand, librarians have traditionally been concerned about the legal implications of providing consumer health information. To address this issue adequately it is necessary to make a distinction between health information and health education. Education implies an effect on the individual-something is learned, and as a result an action is taken, a behavior changed, or a decision made.... Information dissemination facilitates self-education, learning is left to the individual [4].
With these concepts in mind, and driven by the rapidly increasing numbers of questions being received from the public, the society decided that an information center was needed and that its development should focus on the following issues: * What would be the best means for assembling and organizing the specialized materials required for providing excellent information services to the organization's constituency? * In what way could responses be handled effectively when inquiries are complex or the literature does not address the question? * What peripheral refinements could be added to a system employed by a national nonprofit agency that would help promote the image of both the information center and the agency as a whole? In addition to site visits and evaluations of the two leading health-related information services, Epilepsy Foundation of America and an office of the National Cancer Institute's (NCI) Cancer Information Service, a review of the literature produced analyses of systems requirements upon which some of the information service decisions were based. According to one source, a database management system would not only assist in the provision of an electronic spreadsheet, but would serve as a report generator. In addition, many databases could be developed to produce needed library products and assist processing of information requests [5]. Information providers are approached by patrons who expect certain services. Much of the population Bull Med Libr Assoc 79(2) April 1991
Consumer health information
has become computer literate and has a more developed sense of patient participation in health care. The librarian is often expected to be familiar with a variety of online services and to have immediate access to internal databases containing pertinent information [6]. The society decided to begin evaluating available systems that could serve the myriad needs of an information center and would improve service in spite of a relatively small staff. The acquired system would have to meet needs for a variety of information tools.
Documents were written according to perceived need and based upon responsible published reports. The documents were reviewed and edited by at least three members of the Medical Advisory Board's Education Committee.
response time measurably suffered. A delay of three weeks or more became common and with a staff of two, one professional librarian and an information services assistant, the backlog increased. This response rate was unacceptable since the needs of the constituency are the organization's primary concern. Based upon a detailed proposal developed by the librarian, administration decided to appropriately fund and develop an Information Resource Center, increase professional staffing to five (a librarian director, two librarians, a nurse, and a social worker), and to add two support staff. A toll-free information line was planned as well. With the support provided by a $40,000 grant from the Daniel and Florence Guggenheim Foundation, a toll-free line was initiated mid-1987, prior to acquiring an automated system. (Based upon subsequent experience, it is recommended that the system be in place prior to implementation of a toll-free line!) The enhanced staff was able to satisfactorily handle approximately 700 inquiries each month. The addition of the toll-free line and the attendant publicity given to its existence, however, increased the number of calls by nearly 100%-there was no concurrent reduction in standard telephone calls or incoming letters-and once again, speedy information handling became impossible. It was, once again, necessary to address the problems created by "too much success." Administration accepted and approved a recommendation that the society acquire a system separate from its DEC PDP 11 / 44 (a minicomputer, multi-user, time-sharing system with limited capacity). While the DEC system was being used by the library for generating form letters and catalog cards, it could not be used as a means to directly enter client information. A temporary support staff member had been hired for word processing duties, but a more efficient system appropriate to the Information Resource Center and library had merit; it could provide for the highest level of productivity from all staff levels, and allow for confidentiality of information provided by clients in the reference interview and entered during the inquiry intake process. After evaluating available systems, staff chose Cuadra Associates' STAR® * system, which runs on a supermicro. While the STAR features were ideal, unique database development of the system required time, and included creation of lookup tables, report formats, page layouts, and a variety of other applications. Development of the system for routine use took four months. While typical programming was not required, a logical database definition needed to
Inquiries increased from 6,000 in 1982 to 8,000 in 1984 and to more than 12,000 by 1986. As a result,
* STAR is a registered trademark of Cuadra Associates, Inc., Los Angeles, CA.
INFORMATION SERVICE DEVELOPMENT Because of the constant flow of multiple sclerosis questions received and the paucity of adequate published information for response to these questions, an original medical information database was developed. Staff formulated concise responses as needed and compiled the documents in hard-copy format. Medical and library professionals are generally concerned about inconsistency in the quality of patient literature and the inability to guarantee a thorough and responsible review process to assess this quality [7]. The society was able to develop, however, a satisfactory method for assuring accuracy and currency of the information. Documents were written according to perceived need and based upon responsible published reports. The documents were reviewed and edited by at least three members of the Medical Advisory Board's Education Committee. This review represented a consensus of the professional board, a policy agreed upon in advance by all members. The policy proved effective and the resulting National Multiple Sclerosis Society Information Database became the first of many databases that could be entered into an automated system when acquired. Initially, these generic documents were used for ready reference or for mailing, and were an immediate aid in responding to the steady rise in inquiries. The subject headings that were identified as key information needs for the in-house database became the basis of the thesaurus. Terms were added as the current information vertical files developed; the thesaurus now contains more than 1,600 terms.
Bull Med Libr Assoc 79(2) April 1991
191
Calvano
be designed. The results-far superior to turnkey library systems, particularly with the functions and volume required-were well worth the investment in staff time and effort. The intake database speeded up all procedures; the database can interact with any number of other databases, making immediate information and referral possible. Among the many integrated functions, automated response letters and statistical information were now possible as well. Initially, data fields were included based upon those used on the manual intake form (Figure 1). The system was able to take advantage of the extensive software capabilities and, whenever needed, add appropriate fields. The system allows for statistical reports on any field so designated, and thus provides the society with many different statistics. A "topics" field supplies concrete evidence on the most important information needs of the society's constituency. The information database formerly mounted on the DEC system word processor was downloaded to STAR, and with the use of STAR's "electronic thumb," could be accessed for ready reference. Access is easily handled while on the telephone with clients, switching from intake to information database and back. A downloaded zip code directory provides a valuable method for automatically identifying the society's local affiliate office in the geographic area of the person calling, so that a referral can be made immediately. Upon entering the caller's zip code, the correct chapter, including address, telephone, and name of the services coordinator, appears on the screen.
A downloaded zip code directory provides a valuable method for automatically identifying the society's local affilate office in the geographic area of the person calling, so that a referral can be made
immediately. STAR came with databases defined for standard library needs; acquisitions, book catalog, and vertical file holdings could be entered with minimal alterations in database design. The system uses Boolean logic to handle sophisticated searches within every database. The number and size of the databases are limited only by the size of the disk, and disk space can usually be increased. REPORT AND LETTER FORMATS
Depending upon the letter code entered by the information specialist, one of twelve automated cover letters are generated in a batch process on the morn192
ing following receipt of an information request. Material codes are also entered in the appropriate fields and appear on the packing slip. Three printers (a Hewlett-Packard for cover letters and a large and small OKIDATA for rapid printing of packing slips, online search results, and mailing labels) expedite procedures. Manual or computer online searches are specified upon intake, and the printed requisitions for those inquiries are returned to the respective professional staff member for follow-up; the fulfillment date is entered into the system upon completion of library research and mailing of material. Standard materials are collected by support staff, who mail the information within twenty-four hours of receiving the request. Referral slips can also be generated from the intake screen, helping to speed procedures. User response to the information service is evaluated ty routine questioning of repeat callers and entering (E)xcellent, (S)atisfactory, or (U)nsatisfactory in a field designated for that purpose. Statistics gathered from these data show that 67% (970 of 1,448) of the clients who received prior information felt that the material received was excellent, 32% (463 of 1,448) found it to be satisfactory, and only 1% (15 of 1,448) had not been satisfied with the information.
CONCLUSIONS Increased publicity about the National Multiple Sclerosis Society's information service has led to success. Regular phone calls continue, but at a reduced rate. Letters are received at approximately the same rate as before. Volume on the toll-free line, however, doubled between 1987 and 1988. More than 24,000 inquiries were received in 1988 and the center responded to more than 30,000 information requests in 1989. Since 1987, staff has been increased by only two professionals, including one full-time database administrator. At that time, the turnaround time was approximately three weeks in responding to 1,300 inquiries per month after the 1987 mid-year institution of the toll-free line; responses to the current 2,700 enquiries per month are routinely mailed in twentyfour hours. Essential automation is in place and the databases are refined on an ongoing basis. Continuing success and support necessitates storage of historical and specialized research and medical information not easily accessible elsewhere. According to Dervin the system must be able to select from all relevant sources those who hold relevant information and must then select from all relevant information that particular subset that solves the particular need of the seeker. Access to a variety of sources provides the individual with a potential diversity
Bull Med Libr Assoc 79(2) April 1991
elhnoma Consumer health information
Cosmr
Figure 1 Inquiry intake screen (modified)
[h]
STAR Data Entry *Type of Inquiry
[h]
*Source
[Background Info
[a]
*Topic
[b] [fJ
*Referral from
Database: INQ (T)elephone (L)etter (W)alkin, etc (C)lient (F)amily (MD) (RN), etc (Reference interview) (Descriptor) (CH)apter (RN) (MD), etc
Record:
First Name Last Name
[c] [e] [c] [e] [c] [e]
[c] [e] [c] [e] [c] [e] [c] [e] [c] [e] [e] [e]
[d] [d] [a] [d] [g]
Salutation 'Address Zip Code City State Country Area Code *Telephone Chapter Code Chapter Chapter Address Chapter City Chapter State Chap Svc Director *Chap Phone Info Packet *Material order *Inside MS *DBSYL Document Letter to Send
*Text *Postscript Referral Slip
[b] [e] [f]
[f]
(G)eneral (R)esearch (Materials codes) (Issues or articles) (Thesaurus codes) (G)eneral (P)rofessional, etc (Optional personalized letter) (Optional personalized postscript)
(Y/N)
*Referred to *Notes
(Initialized codes) (Optional intake remarks)
Information Only *Fulfilled By
(Y/N)
*Fulfilled Date *Date Stamp *Update Stamp
(Initialized codes)
(Automated entry) ((U) at Command line)
Enter command. Command: Help DAtabase Create Recall Next PRevious COpy IGnore Save Update DElete SEARCH INDEX GLOBAL MENU Interactive databases and tables: [a] Thesaurus [b] Referrals [c] Zips [d] Materials [e] Chapters [f] Departments [g] Letters [h] Lookup tables * = Multiple occurrences or continuous text ( ) = Entry code or information
Bull Med Libr Assoc 79(2) April 1991
193
Calvano of information types. Access to appropriate information solutions allows the individual to decrease that diversity by selectively choosing relevant information [8].
The Information Resource Center and library of the National Multiple Sclerosis Society joins other notfor-profit leaders in meeting the information needs of their constituency by collecting and selectively disseminating comprehensive information on a particular disorder. The center has already produced a marked improvement in the public's awareness of the organization and the disorder, multiple sclerosis. User response to the information service has been positive as evidenced by statistics retrieved from the system based upon questioning satisfaction levels of repeat callers. These statistics, and the dynamic nature of the computer system, encourage and allow the continued improvement of the society's information service.
2. KNowLEs JH. Responsibility for health [editorial]. Science 1977 Dec 16;198(4322):1103. 3. ETZWILER DD. The contract for health care. JAMA 1973 May 14;224(7):1034. 4. EAKIN D, JACKSON SJ, HANNIGAN GG. Consumer health information: libraries as partners. Bull Med Libr Assoc 1980 Apr;68(2):220-1. 5. KESNER RM, JONES CH. Microcomputer applications in libraries: a management tool for the 1980s and beyond. Westport, CT: Greenwood Press, 1984:123. 6. IBID., 209-10. 7. FECHER E. Consumer health information: a prognosis. Wilson Libr Bull 1985 Feb;59(6):389-90. 8. DERvIN B. The everyday needs of the average citizen: a taxonomy for analysis. In: Kochen M, Donohue JC, eds. Information for the community. Chicago: American Library Association, 1976:21.
Received August 1989; accepted October 1990
REFERENCES 1. KAY P. Public access to health information: a psychoanalyst's view. RQ 1983 Summer;22(4):400-8.
FROM THE BULLETIN-25 YEARS AGO
Centralization vs. decentralization in medical school libraries By Helen Crawford, Librarian, University of Wisconsin Medical School, Madison, Wisconsin The major arguments in favor of centralization are economy and efficiency. Viewed operationally, centralizing all ordering and processing should reduce duplication of materials and effort, should reduce costs by using the same staff and machinery for all similar operations, and should promote uniformity of treatment and speed of flow. The cost of duplication of material in science must be weighed against the needs of a rapidly increasing scientific clientele on a university campus and against the expense in staff time, delay, and irritation involved in efforts to control it. Bryant observes: "provided this expense can be kept to a thoughtful minimum-and the process of coordination is the chief force in this regard-the advantages of local libraries tailored to the specific needs of a special department or institution would seem to warrant the relatively small price paid." The economy of centralized processing, which depends upon assembly line methods of processing multiple copies of easily secured items for an undifferentiated clientele, is most apparent in public or undergraduate libraries. It is somewhat of a myth in a large university cataloging department giving individual treatment to publications on highly specialized topics under difficult forms of entry. Bull Med Libr Assoc 1966 Jul;54(3):203
194
Bull Med Libr Assoc 79(2) April 1991
National Multiple Sclerosis Society 205 East 42d Street New York, New York 10017
Driven by increasing consumer demand, not-for-profit health agencies are responding by providing accurate, current information about the disorders they deal with. A case history of the information service at the National Multiple Sclerosis Society and the role of the health sciences librarian in the development of such information centers is described. The librarian, as information provider in the health agency setting, obtains professional advisory support, thus assuring delivery of the most responsible information to the constituency represented by the organization. An overview of the decision-making process for development of such a service is provided, including a description of the Cuadra STAR integrated online system. This system offers an infinite number of databases with immediate access to cross database searching of pertinent internal files and standard library records. A random survey of consumers, based on questioning repeat callers, has indicated an overwhelmingly positive response to this service.
Consumer health information has been, until recent years, a neglected corner in the field of librarianship. This has clearly been the result of the medical profession's historical responsibility for providing adequate information and education to their patients at the individual physician's discretion. The public, however, is now choosing to acquire a more comprehensive knowledge about matters relating to health and disease, and it is incumbent upon health sciences librarians to respond to the public's need.
The public is now choosing to acquire a more comprehensive knowledge about matters relating to health and disease, and it is incumbent upon health sciences librarians to respond to the public's need.
While the physician's responsibility remains, the public, with its ever-increasing knowledge and sophistication in matters related to health and the patient's "right to know," is demanding a more comprehensive reinforcement of education and information on disease-specific topics and preventive health-related matters. Paul Kay suggested that health Bull Med Libr Assoc 79(2) April 1991
sciences librarians should consider themselves a catalyst for patient education and that there should be networking between organizations, health professionals, and librarians [1]. The decade of the '80s has witnessed an enormous increase in patient demand for information about personal health problems. Health professionals, overtaxed by the burden of primary caregiving, the everincreasing responsibilities for administrative record keeping, and the need to devote time to educating themselves in this time of burgeoning medical and technological advances, are beginning to recognize that appropriate patient education support is needed. Who could provide such information in a responsible manner? The role of health sciences librarians is not to educate or advise, but rather to serve as a natural resource for consumer health information. A 1977 editorial in Science stressed that the obligation to preserve one's own health implies a right to expect help with information. This statement suggests a role for libraries, for are not librarians information brokers above all? ... Health information is not really lacking; in fact it abounds. There are voluntary health organizations for every significant disease, each existing for the purpose of giving information and assistance to those afflicted by the disease and their families [2]. 189
Calvano
This statement is only partially correct. Often, notfor-profit agencies prefer to concentrate their funds on the promotion of research or medicosocial services, with information and education relegated to a secondary role. During the '80s the emphasis changed, however, and agencies are now recognizing the public's right to obtain information about personal health matters. To remain viable in the fields of research and services, health agencies must provide excellent information support services as well. The public's new awareness has created information demands that go beyond those that the patient's medical care team can be expected to provide.
During the '80s the emphasis changed, however, and agencies are now recognizing the public's right to obtain information about personal health matters. To remain viable in the fields of research and services, health agencies must provide excellent information support services as well. This paper describes a case history of an agency that was sensitive to its constituency's needs, the factors leading to the development of a sophisticated information center within a not-for-profit health agency, and the decisions affecting implementation of an automated system for effective information service delivery.
HISTORY The National Multiple Sclerosis Society has functioned successfully in the research and medicosocial services arena since 1946, the year of its founding. The provision of information about multiple sclerosis and related issues, however, saw little change between the time of the organization's creation and the beginning of the last decade. In 1982, the national office received 6,000 questions about the disease, its treatment, possible causes, current research, a potential cure, and rehabilitation. The society's medical programs and education staff guided the development or reprinting of general brochures and pamphlets used for information dissemination. Staff solicited assistance from Medical Advisory Board members to answer occasional esoteric questions from either professionals or the public. In 1982, the rising numbers of inquiries resulted in a decision to acquire the full-time services of a health sciences librarian to function as a literature researcher, to acquire pertinent materials, and to develop an appropriate means for disseminating information. Responsibilities included the formulation of 190
replies to the increasingly frequent complex medical inquiries posed by a public with greater sophistication and knowledge of health issues. Prior to 1982, the society's textbook resources were randomly collected, not appropriately classified, and inadequate in coverage. It was also difficult to access a collection of approximately 10,000 reprints classified by a unique numbering system. PROCESS ANALYSIS As early as 1973, D. D. Etzwiler warned that failure to provide adequate health information to patients could be perceived as malpractice [3]. On the other hand, librarians have traditionally been concerned about the legal implications of providing consumer health information. To address this issue adequately it is necessary to make a distinction between health information and health education. Education implies an effect on the individual-something is learned, and as a result an action is taken, a behavior changed, or a decision made.... Information dissemination facilitates self-education, learning is left to the individual [4].
With these concepts in mind, and driven by the rapidly increasing numbers of questions being received from the public, the society decided that an information center was needed and that its development should focus on the following issues: * What would be the best means for assembling and organizing the specialized materials required for providing excellent information services to the organization's constituency? * In what way could responses be handled effectively when inquiries are complex or the literature does not address the question? * What peripheral refinements could be added to a system employed by a national nonprofit agency that would help promote the image of both the information center and the agency as a whole? In addition to site visits and evaluations of the two leading health-related information services, Epilepsy Foundation of America and an office of the National Cancer Institute's (NCI) Cancer Information Service, a review of the literature produced analyses of systems requirements upon which some of the information service decisions were based. According to one source, a database management system would not only assist in the provision of an electronic spreadsheet, but would serve as a report generator. In addition, many databases could be developed to produce needed library products and assist processing of information requests [5]. Information providers are approached by patrons who expect certain services. Much of the population Bull Med Libr Assoc 79(2) April 1991
Consumer health information
has become computer literate and has a more developed sense of patient participation in health care. The librarian is often expected to be familiar with a variety of online services and to have immediate access to internal databases containing pertinent information [6]. The society decided to begin evaluating available systems that could serve the myriad needs of an information center and would improve service in spite of a relatively small staff. The acquired system would have to meet needs for a variety of information tools.
Documents were written according to perceived need and based upon responsible published reports. The documents were reviewed and edited by at least three members of the Medical Advisory Board's Education Committee.
response time measurably suffered. A delay of three weeks or more became common and with a staff of two, one professional librarian and an information services assistant, the backlog increased. This response rate was unacceptable since the needs of the constituency are the organization's primary concern. Based upon a detailed proposal developed by the librarian, administration decided to appropriately fund and develop an Information Resource Center, increase professional staffing to five (a librarian director, two librarians, a nurse, and a social worker), and to add two support staff. A toll-free information line was planned as well. With the support provided by a $40,000 grant from the Daniel and Florence Guggenheim Foundation, a toll-free line was initiated mid-1987, prior to acquiring an automated system. (Based upon subsequent experience, it is recommended that the system be in place prior to implementation of a toll-free line!) The enhanced staff was able to satisfactorily handle approximately 700 inquiries each month. The addition of the toll-free line and the attendant publicity given to its existence, however, increased the number of calls by nearly 100%-there was no concurrent reduction in standard telephone calls or incoming letters-and once again, speedy information handling became impossible. It was, once again, necessary to address the problems created by "too much success." Administration accepted and approved a recommendation that the society acquire a system separate from its DEC PDP 11 / 44 (a minicomputer, multi-user, time-sharing system with limited capacity). While the DEC system was being used by the library for generating form letters and catalog cards, it could not be used as a means to directly enter client information. A temporary support staff member had been hired for word processing duties, but a more efficient system appropriate to the Information Resource Center and library had merit; it could provide for the highest level of productivity from all staff levels, and allow for confidentiality of information provided by clients in the reference interview and entered during the inquiry intake process. After evaluating available systems, staff chose Cuadra Associates' STAR® * system, which runs on a supermicro. While the STAR features were ideal, unique database development of the system required time, and included creation of lookup tables, report formats, page layouts, and a variety of other applications. Development of the system for routine use took four months. While typical programming was not required, a logical database definition needed to
Inquiries increased from 6,000 in 1982 to 8,000 in 1984 and to more than 12,000 by 1986. As a result,
* STAR is a registered trademark of Cuadra Associates, Inc., Los Angeles, CA.
INFORMATION SERVICE DEVELOPMENT Because of the constant flow of multiple sclerosis questions received and the paucity of adequate published information for response to these questions, an original medical information database was developed. Staff formulated concise responses as needed and compiled the documents in hard-copy format. Medical and library professionals are generally concerned about inconsistency in the quality of patient literature and the inability to guarantee a thorough and responsible review process to assess this quality [7]. The society was able to develop, however, a satisfactory method for assuring accuracy and currency of the information. Documents were written according to perceived need and based upon responsible published reports. The documents were reviewed and edited by at least three members of the Medical Advisory Board's Education Committee. This review represented a consensus of the professional board, a policy agreed upon in advance by all members. The policy proved effective and the resulting National Multiple Sclerosis Society Information Database became the first of many databases that could be entered into an automated system when acquired. Initially, these generic documents were used for ready reference or for mailing, and were an immediate aid in responding to the steady rise in inquiries. The subject headings that were identified as key information needs for the in-house database became the basis of the thesaurus. Terms were added as the current information vertical files developed; the thesaurus now contains more than 1,600 terms.
Bull Med Libr Assoc 79(2) April 1991
191
Calvano
be designed. The results-far superior to turnkey library systems, particularly with the functions and volume required-were well worth the investment in staff time and effort. The intake database speeded up all procedures; the database can interact with any number of other databases, making immediate information and referral possible. Among the many integrated functions, automated response letters and statistical information were now possible as well. Initially, data fields were included based upon those used on the manual intake form (Figure 1). The system was able to take advantage of the extensive software capabilities and, whenever needed, add appropriate fields. The system allows for statistical reports on any field so designated, and thus provides the society with many different statistics. A "topics" field supplies concrete evidence on the most important information needs of the society's constituency. The information database formerly mounted on the DEC system word processor was downloaded to STAR, and with the use of STAR's "electronic thumb," could be accessed for ready reference. Access is easily handled while on the telephone with clients, switching from intake to information database and back. A downloaded zip code directory provides a valuable method for automatically identifying the society's local affiliate office in the geographic area of the person calling, so that a referral can be made immediately. Upon entering the caller's zip code, the correct chapter, including address, telephone, and name of the services coordinator, appears on the screen.
A downloaded zip code directory provides a valuable method for automatically identifying the society's local affilate office in the geographic area of the person calling, so that a referral can be made
immediately. STAR came with databases defined for standard library needs; acquisitions, book catalog, and vertical file holdings could be entered with minimal alterations in database design. The system uses Boolean logic to handle sophisticated searches within every database. The number and size of the databases are limited only by the size of the disk, and disk space can usually be increased. REPORT AND LETTER FORMATS
Depending upon the letter code entered by the information specialist, one of twelve automated cover letters are generated in a batch process on the morn192
ing following receipt of an information request. Material codes are also entered in the appropriate fields and appear on the packing slip. Three printers (a Hewlett-Packard for cover letters and a large and small OKIDATA for rapid printing of packing slips, online search results, and mailing labels) expedite procedures. Manual or computer online searches are specified upon intake, and the printed requisitions for those inquiries are returned to the respective professional staff member for follow-up; the fulfillment date is entered into the system upon completion of library research and mailing of material. Standard materials are collected by support staff, who mail the information within twenty-four hours of receiving the request. Referral slips can also be generated from the intake screen, helping to speed procedures. User response to the information service is evaluated ty routine questioning of repeat callers and entering (E)xcellent, (S)atisfactory, or (U)nsatisfactory in a field designated for that purpose. Statistics gathered from these data show that 67% (970 of 1,448) of the clients who received prior information felt that the material received was excellent, 32% (463 of 1,448) found it to be satisfactory, and only 1% (15 of 1,448) had not been satisfied with the information.
CONCLUSIONS Increased publicity about the National Multiple Sclerosis Society's information service has led to success. Regular phone calls continue, but at a reduced rate. Letters are received at approximately the same rate as before. Volume on the toll-free line, however, doubled between 1987 and 1988. More than 24,000 inquiries were received in 1988 and the center responded to more than 30,000 information requests in 1989. Since 1987, staff has been increased by only two professionals, including one full-time database administrator. At that time, the turnaround time was approximately three weeks in responding to 1,300 inquiries per month after the 1987 mid-year institution of the toll-free line; responses to the current 2,700 enquiries per month are routinely mailed in twentyfour hours. Essential automation is in place and the databases are refined on an ongoing basis. Continuing success and support necessitates storage of historical and specialized research and medical information not easily accessible elsewhere. According to Dervin the system must be able to select from all relevant sources those who hold relevant information and must then select from all relevant information that particular subset that solves the particular need of the seeker. Access to a variety of sources provides the individual with a potential diversity
Bull Med Libr Assoc 79(2) April 1991
elhnoma Consumer health information
Cosmr
Figure 1 Inquiry intake screen (modified)
[h]
STAR Data Entry *Type of Inquiry
[h]
*Source
[Background Info
[a]
*Topic
[b] [fJ
*Referral from
Database: INQ (T)elephone (L)etter (W)alkin, etc (C)lient (F)amily (MD) (RN), etc (Reference interview) (Descriptor) (CH)apter (RN) (MD), etc
Record:
First Name Last Name
[c] [e] [c] [e] [c] [e]
[c] [e] [c] [e] [c] [e] [c] [e] [c] [e] [e] [e]
[d] [d] [a] [d] [g]
Salutation 'Address Zip Code City State Country Area Code *Telephone Chapter Code Chapter Chapter Address Chapter City Chapter State Chap Svc Director *Chap Phone Info Packet *Material order *Inside MS *DBSYL Document Letter to Send
*Text *Postscript Referral Slip
[b] [e] [f]
[f]
(G)eneral (R)esearch (Materials codes) (Issues or articles) (Thesaurus codes) (G)eneral (P)rofessional, etc (Optional personalized letter) (Optional personalized postscript)
(Y/N)
*Referred to *Notes
(Initialized codes) (Optional intake remarks)
Information Only *Fulfilled By
(Y/N)
*Fulfilled Date *Date Stamp *Update Stamp
(Initialized codes)
(Automated entry) ((U) at Command line)
Enter command. Command: Help DAtabase Create Recall Next PRevious COpy IGnore Save Update DElete SEARCH INDEX GLOBAL MENU Interactive databases and tables: [a] Thesaurus [b] Referrals [c] Zips [d] Materials [e] Chapters [f] Departments [g] Letters [h] Lookup tables * = Multiple occurrences or continuous text ( ) = Entry code or information
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Calvano of information types. Access to appropriate information solutions allows the individual to decrease that diversity by selectively choosing relevant information [8].
The Information Resource Center and library of the National Multiple Sclerosis Society joins other notfor-profit leaders in meeting the information needs of their constituency by collecting and selectively disseminating comprehensive information on a particular disorder. The center has already produced a marked improvement in the public's awareness of the organization and the disorder, multiple sclerosis. User response to the information service has been positive as evidenced by statistics retrieved from the system based upon questioning satisfaction levels of repeat callers. These statistics, and the dynamic nature of the computer system, encourage and allow the continued improvement of the society's information service.
2. KNowLEs JH. Responsibility for health [editorial]. Science 1977 Dec 16;198(4322):1103. 3. ETZWILER DD. The contract for health care. JAMA 1973 May 14;224(7):1034. 4. EAKIN D, JACKSON SJ, HANNIGAN GG. Consumer health information: libraries as partners. Bull Med Libr Assoc 1980 Apr;68(2):220-1. 5. KESNER RM, JONES CH. Microcomputer applications in libraries: a management tool for the 1980s and beyond. Westport, CT: Greenwood Press, 1984:123. 6. IBID., 209-10. 7. FECHER E. Consumer health information: a prognosis. Wilson Libr Bull 1985 Feb;59(6):389-90. 8. DERvIN B. The everyday needs of the average citizen: a taxonomy for analysis. In: Kochen M, Donohue JC, eds. Information for the community. Chicago: American Library Association, 1976:21.
Received August 1989; accepted October 1990
REFERENCES 1. KAY P. Public access to health information: a psychoanalyst's view. RQ 1983 Summer;22(4):400-8.
FROM THE BULLETIN-25 YEARS AGO
Centralization vs. decentralization in medical school libraries By Helen Crawford, Librarian, University of Wisconsin Medical School, Madison, Wisconsin The major arguments in favor of centralization are economy and efficiency. Viewed operationally, centralizing all ordering and processing should reduce duplication of materials and effort, should reduce costs by using the same staff and machinery for all similar operations, and should promote uniformity of treatment and speed of flow. The cost of duplication of material in science must be weighed against the needs of a rapidly increasing scientific clientele on a university campus and against the expense in staff time, delay, and irritation involved in efforts to control it. Bryant observes: "provided this expense can be kept to a thoughtful minimum-and the process of coordination is the chief force in this regard-the advantages of local libraries tailored to the specific needs of a special department or institution would seem to warrant the relatively small price paid." The economy of centralized processing, which depends upon assembly line methods of processing multiple copies of easily secured items for an undifferentiated clientele, is most apparent in public or undergraduate libraries. It is somewhat of a myth in a large university cataloging department giving individual treatment to publications on highly specialized topics under difficult forms of entry. Bull Med Libr Assoc 1966 Jul;54(3):203
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