Development of a National Genetic Services Database F. John Meaney, Ph.D., George C. Cunningham, M.D., M.P.H., and Susan M. Riggle Regional Networks for Genetics Services, or CORN, came into official existence.
Abstract The Council of Regional Networks for Genetics Services (CORN) designed and developed a database collection project to collect minimum data regarding genetic services provided throughout the United States. The data collection project has been designed to improve the provision of services and to determine areas of utilization.
The goal of establishing a supra-regional organization, i.e., Council, to provide national coordination for the regional genetics services networks, has been accomplished. One of the major purposes of the CORN project, as stated in the original federal guidelines and grant application, is to develop a uniform system for data collection and analysis regarding genetic services.
Introduction Background The origins of the Council of Regional Networks for Genetics Services may be found in the Summary Report of a 1984 Workshop on Future Directions of the National Genetics Program[11. This workshop produced a number of major recommendations that have provided important focal points for the federal genetic services effort during the remainder of the 1980s. Among the major recommendations were the following: 1) the expansion and acceleration of the regional genetic services networks on a nationwide basis; and 2) encouragement of the collection of minimum data on genetic services to provide a basis for documenting the utilization of The workshop group also these services. emphasized a number of additional areas that needed attention, including what was referred to as a national supra-regional organization. The latter organization was referenced in a section on regionalization as follows:
Creation of the CORN Data and Evaluation Committee CORN created a Data and Evaluation Committee consisting of one representative from each of the ten regional networks. CORN provided staff, a Data Coordinator, and expenses. The Committee was charged with the responsibility of identifying the current level and scope of clinical genetics services provided on a state by state basis. The information sought included: 1) reasons and conditions for which people seek out or are referred for genetics services; 2) the volume and types of services delivered; 3) provider types delivering services; and 4) demographic characteristics of the population served in genetics clinics. The Committee accomplishes this assignment by the annual collection of a minimum data set (MDS).
Development of the Minimum Data Set Collection Concept First, the Committee identified the least number of data elements to be collected from participating reporting units to meet the fundamental objectives on data reporting. The CORN MDS data elements are basic variables chosen to be of mutual significance to the ten CORN regions and to be of interest to federal funding agencies, policy makers, researchers and grantwriters.
A supra-regional system such as a council of regional networks, should be considered to ensure open communication among regions and encourage the development of
guidelines for minimal standards (for services, laboratories, educational programs, collection of data, etc.). In July 1985, a group of genetic services providers, public health officials, consumers and representatives of sickle cell disease programs met for several days in Washington, D.C. to begin planning for such an organization. A report was produced entitled Council of Regional Networks for Genetics Services: Report of a Meeting Held July 8-9, 1985, Georgetown University, Washington, D.C.121 and was submitted with the original grant application for the project. Thus, the Council of 0195-4210/91/$5.00 © 1992 AMIA, Inc.
The Mid Atlantic Regional Human Genetics Network (MARHGN) was the first to establish the collection of a minimum data set regarding genetics. The CORN Minimum Data Set patterned a majority of data element requests after MARHGN's collection.
424
The Committee realized that a vast number of data items could be of interest to providers and planners of genetic services. Items such as level of patient income, socioeconomic status of patient and/or source of payment by patient could be considered important and valid. It was decided, however, that collecting such data could create a project of such ambition and magnitude as to potentially hinder the success of the operation. The Committee, therefore, chose to be practical and to concentrate on the complete and accurate collection of a few essential items in a truly comparable and uniform manner.
was believed appropriate even though some clinics and/or states did not collect racial data or used different categories.
Minimum Data Set Elements The Committee separated the MDS collection into three divisions of elements: 1) prenatal patients/services; 2) clinical genetics patients/services; and 3) laboratory services. The separation between prenatal and clinical patients/services was instituted since prenatal services were already well-established with specific data collection needs determined. The current elements collected for prenatal and clinical patients/services are listed below in Table 1. (Laboratory services are not charted).
A physical (clinical or laboratory) facility or site which has on its staff (or has arranged for consultation from) one or more of the
Presently, the Minimum Data Set collection is set up to gather purely descriptive data without cross tabulations or denominators. Agencies Providing Data Agencies which provide data for the CORN Minimum Data Set collection are described by the Committee as reporting units. A reporting unit has been defined as follows:
following appropriately qualified medical geneticist, professionals: cytogeneticist or laboratory director. This facility or site offers, as its major or exclusive service, specific genetic testing, diagnostics, counseling, and/or disorder management services. Satellites of such a facility, i.e., alternative locations where staff provide intermittent genetic services, should be listed under, and their workload reported by, the supporting central facility.
Each data element was selected for a purpose. Many months of discussion and compromise preceded the final selections. The Committee attempted to adhere to already established standards of previous data collections. For example, it was decided that data collected on race should follow the format of the U.S. census. This standard
It is the goal of CORN to identify and list all such units and to collect and report data on their services. Genetic services rendered incidentally in general medical practice are not included. Reporting units provide data for the MDS Report on a voluntary basis.
TABLE 1 Prenatal Patients/Services
J Clinical Patients/Services
Age of Patient
Age & Sex of Patient
Race/Hispanic Origin of Patient
Race/Hispanic Origin of Patient
Urban/Rural Residence of Patient Primary Indication for
Urban/Rural Residence of Patient Count of New/Repeat Patients
Prenatal Service Counts of Services Provided
Counts of Services Provided
Diagnostic Evaluations Completed/Not Completed
Reasons for Referral and Final Diagnosis Count (Pilot Project)
425
]
Methodology
The Great Plains Genetics Services Network (GPGSN) obtains data in aggregate form from participating states. Once data are compiled at the state level they are directed onto the regional level (in diskette form) for further compilation, review and regional reporting.
CORN MDS Collection Packet The CORN MDS collection packet is the tool utilized to collect the MDS elements. This packet consists of background, instructions and thirteen separate data collection forms (6 prenatal, 6 clinical and 1 laboratory). The Committee reviews and revises the MDS collection on an annual basis to insure that the collection is satisfying the reporting needs and the objectives of the CORN data collection effort. Revisions of the MDS collection forms are made only in an effort to simplify, clarify and/or update. An attempt has been made to keep the MDS data elements and definitions as close to the original request as possible.
Implementation of the MDS Collection The MDS collection packets, after Committee revisions, are distributed to the Regional Data Coordinators of the ten CORN regions along with mailing labels for each reporting unit from the MDS database and a draft form letter for personalization. Eich region has a regional Data Committee and Data Coordinator who decide the most appropriate manner in which to collect the CORN MDS data elements. In addition, each region is allowed the option of adding data elements to the basic MDS request. CORN supports any manner of data collection and any addition of data element requests as long as data collected are accurate and are capable of being aggregated into the CORN MDS categories.
The Genetics Network of the Empire State (GENES) receives data in hard copy form and compiles it into a database at a central computer. Data are used to generate feedback reports for the region.
*
The Great Lakes Regional Genetics Group (GLaRGG) is creating a custom designed software application program entitled "The CORN Kernel" (TCK). Reporting units will utilize this software for clinical database maintenance and supply (in diskette form) aggregate data for the region.
The Mid Atlantic Regional Human Genetics Network (MARHGN) has its own minimum data set collection established and produces regional reports.
*
The Mountain States Regional Genetics Services Network (MSRGSN) is working toward compiling data from participating reporting units via a network computer system.
* The New England Regional Genetics Group (NERGG) collects data on an individual reporting unit basis. Some reporting units utilize a software system designed specifically for the collection of the CORN MDS data elements and additional data items requested by the NERGG region. NERGG also produces regional reports. *
The Pacific Southwest Regional Genetics Network (PSRGN) has a centralized computer collection system for collecting California prenatal data.
Computer Compilation of Data into a CORN MDS Report Minimum Data Set data elements are entered, compiled and stored on an IBM compatible 286/AT personal computer. Data are provided to the CORN Data Coordinator by each of the ten regional Data Coordinators either in state tallies or by individual reporting unit responses. An application program, custom designed in dBase IV, compiles the CORN MDS data elements entered. This application program is named the CORN Minimum Data Set Collection System.
Because of the uniform definitions of variables, any variety of procedures may be employed in the individual regions. A few examples of regional data collecting procedures are as follows: >
*
Upon data entry, the Data Coordinator inspects data collected for accuracy and completeness. Data are compared with previous year's collections for data integrity. Once data are entered from the hard copies, the compiled totals are backed up daily onto floppy diskettes and stored in a separate location from originals and computer harddrive.
426
After data elements are compiled into individual state totals, the totals are translated into Lotus 123, a software application spreadsheet program. The Lotus 123 software application program is versatile and offers ease of manipulation of the data to create data tables, charts and graphs. The text of the MDS Report is written and combined with the tables, charts and graphs. Drafts of the MDS Report are reviewed by Regional Data Coordinators and caveats (explanations to prevent misinterpretation) with respect to specific responses, are added.
There were 69,839 clinical visits by non-pregnant patients with slightly more females than males. The majority of these services were for children under 14 years of age. Of those identifying race, 3/4 of the patients were white and 1/4 were non white. About 1/6 of the whites were Hispanic. There were 95,691 clinical genetic services, 11,730 procedures and 13,743 other services provided. The final MDS Report is available upon request from CORN, for detailed analysis.
CORN MDS Report Composition Data are compiled on a state by state basis. The MDS Report is categorized into two portions: 1) National Data; and 2) Regional Data. National data are regional data totals compiled into a national total. Regional data are state totals
Recommendations Regarding Data Reporting The recently published Healthy People 2000: National Health Promotion and Disease Prevention Objectives, Full Repotl31 places a great deal of emphasis on data collection as the means of evaluating progress toward meeting the Year 2000 Objectives. An entire section of the report is devoted to surveillance and data systems. Objectives throughout the report refer to baseline data (or the lack thereof) for monitoring progress. In addition, two major objectives relating to genetics services are included under Maternal and Infant Health. One relates to prenatal care and identifies the tracking and usage of MSAFP tests and the second relates to newborn screening and refers directly to the CORN Newborn Screening Report (which will be the subject of a future paper). It should be noted that the availability of data from the CORN data collection projects insured that genetics was included in such a significant document.
Discussion
compiled into their respective regional totals. There are two versions of the MDS Report: Version I, the Basic MDS Report which supplies only one Regional Data packet (the Regional Data packet for the region where the report recipient is located), and Version II, the Comprehensive MDS Report which supplies the National Data portion of the report plus all Regional Data packets. CORN MDS Report Distribution Once the CORN MDS Report is finalized, it is distributed to the 10 Regional Data Coordinators with the new year's MDS collection packets. The Regional Data Coordinators distribute the final report to all participating Reporting Units. The CORN Data Coordinator distributes the report to all State Health Off'icers/Directors and to Federal
The national effort to provide quality genetics services cannot expect to receive appropriate public and financial support if the descriptive data on patients and services cannot be provided and the outcome of services provision cannot be demonstrated. The CORN data collection and reporting effort, although not yet a complete system, has taken a major step in providing a national database which will provide a reasonable baseline from which to monitor change[41.
Genetics Services Branch Personnel. The public may also receive an MDS Report upon request. Overview of MDS Report Results CORN has identified approximately 400 reporting units (private and public) and over 240 (60%) responded to the 1989 MDS request. The respondents reported a total of 124,052 prenatal patients which received 302,847 individual prenatal clinical services and 481,667 laboratory tests. Sixty two percent of these services were for advanced maternal age and fourteen percent were for abnormal alphafetoprotein levels in maternal blood (maternal serum alphafetoprotein or MSAFP). There were 6,562 fetal abnormalities found amongst those with completed evaluations.
Data Analysis In order to encourage full participation and
submission of data from reporting units, the Committee decided not to develop an extensive analysis of the minimum data provided. Instead, the Committee has chosen to view the project as a scheme which generates a reliable resource for
427
individual researchers and administrators to use in evaluating and developing health policy.
Accomplishments The establishment of a national system of data collection based on the ten regional networks has been one of the major accomplishments of CORN during the 1980s. CORN generates a tremendous quantity of high quality information for a relatively small cost when compared to other data collection efforts. If additional resources were provided many problems regarding the Minimum Data Set collection failings could be addressed and the data collection effort could be expanded.
Currently, there are selective states and regions where the data are sufficiently complete and accurate to serve as a valid planning and evaluation resource. Where state health departments have taken the initiative to collect data or mandatory reporting systems exist, the MDS can be used for valid comparison. Two examples are the Genetics Network of the Empire State (GENES), operated by New York State, which provides a rather complete and detailed set of data from state funded clinics, and California which has a complete collection of prenatal clinical services mandated by law.
The Future The CORN data collection and reporting project should continue as an important resource in evaluating progress toward the Year 2000 Objectives. The structure and organization for maintaining this important data collection effort are in place and fiscal support should continue throughout the remainder of the CORN project.
Limitations There are many data reporting obstacles. When reporting is voluntary and not mandated, it tends to be incomplete. Most public funded providers participate, but private providers tend not to report and are thus underrepresented.
The CORN MDS collection is the only data available for what is the most rapidly expanding area of health care. As such, it fills a unique need and deserves to be improved and widely disseminated. The data system must also continue to respond to newly identified needs for data collection, but at the same time maintain its stability and continuity.
Another major problem encountered is that data collecting efforts are inadequately funded and staffed. Data collecting is generally treated as an additional burden on top of other responsibilities. In addition, regions that have already established a data collection program have a certain degree of resistance when asked to alter their established program to accommodate incorporation of their data into the national totals.
The CORN MDS data collection system provides a valuable framework upon which a reliable computerized national database can be built. Much, however, remains to be done and we hope this important project will continue even in the face of the ever-present threat of funding cuts.
1. USDHHS (1984) Summary Report: Future Directions of the National Genetics Program Workshop.
2. Amato, RS (1985) Council of Regional Networks for Genetics Services: Report of a Meeting Held July 8-9, 1985, Georgetown University, Washington, DC. 3. USDHHS (1990) Healthy People 2000, National Health Promotion and Disease Prevention Objectives Full Report, with Commentary. 22:549-562. 4. Meaney, FJ (1987) Databases for Genetic Services: Current Usages and Future Directions. Journal of Medical Systems 11:2227-232.
428
Abstract The Council of Regional Networks for Genetics Services (CORN) designed and developed a database collection project to collect minimum data regarding genetic services provided throughout the United States. The data collection project has been designed to improve the provision of services and to determine areas of utilization.
The goal of establishing a supra-regional organization, i.e., Council, to provide national coordination for the regional genetics services networks, has been accomplished. One of the major purposes of the CORN project, as stated in the original federal guidelines and grant application, is to develop a uniform system for data collection and analysis regarding genetic services.
Introduction Background The origins of the Council of Regional Networks for Genetics Services may be found in the Summary Report of a 1984 Workshop on Future Directions of the National Genetics Program[11. This workshop produced a number of major recommendations that have provided important focal points for the federal genetic services effort during the remainder of the 1980s. Among the major recommendations were the following: 1) the expansion and acceleration of the regional genetic services networks on a nationwide basis; and 2) encouragement of the collection of minimum data on genetic services to provide a basis for documenting the utilization of The workshop group also these services. emphasized a number of additional areas that needed attention, including what was referred to as a national supra-regional organization. The latter organization was referenced in a section on regionalization as follows:
Creation of the CORN Data and Evaluation Committee CORN created a Data and Evaluation Committee consisting of one representative from each of the ten regional networks. CORN provided staff, a Data Coordinator, and expenses. The Committee was charged with the responsibility of identifying the current level and scope of clinical genetics services provided on a state by state basis. The information sought included: 1) reasons and conditions for which people seek out or are referred for genetics services; 2) the volume and types of services delivered; 3) provider types delivering services; and 4) demographic characteristics of the population served in genetics clinics. The Committee accomplishes this assignment by the annual collection of a minimum data set (MDS).
Development of the Minimum Data Set Collection Concept First, the Committee identified the least number of data elements to be collected from participating reporting units to meet the fundamental objectives on data reporting. The CORN MDS data elements are basic variables chosen to be of mutual significance to the ten CORN regions and to be of interest to federal funding agencies, policy makers, researchers and grantwriters.
A supra-regional system such as a council of regional networks, should be considered to ensure open communication among regions and encourage the development of
guidelines for minimal standards (for services, laboratories, educational programs, collection of data, etc.). In July 1985, a group of genetic services providers, public health officials, consumers and representatives of sickle cell disease programs met for several days in Washington, D.C. to begin planning for such an organization. A report was produced entitled Council of Regional Networks for Genetics Services: Report of a Meeting Held July 8-9, 1985, Georgetown University, Washington, D.C.121 and was submitted with the original grant application for the project. Thus, the Council of 0195-4210/91/$5.00 © 1992 AMIA, Inc.
The Mid Atlantic Regional Human Genetics Network (MARHGN) was the first to establish the collection of a minimum data set regarding genetics. The CORN Minimum Data Set patterned a majority of data element requests after MARHGN's collection.
424
The Committee realized that a vast number of data items could be of interest to providers and planners of genetic services. Items such as level of patient income, socioeconomic status of patient and/or source of payment by patient could be considered important and valid. It was decided, however, that collecting such data could create a project of such ambition and magnitude as to potentially hinder the success of the operation. The Committee, therefore, chose to be practical and to concentrate on the complete and accurate collection of a few essential items in a truly comparable and uniform manner.
was believed appropriate even though some clinics and/or states did not collect racial data or used different categories.
Minimum Data Set Elements The Committee separated the MDS collection into three divisions of elements: 1) prenatal patients/services; 2) clinical genetics patients/services; and 3) laboratory services. The separation between prenatal and clinical patients/services was instituted since prenatal services were already well-established with specific data collection needs determined. The current elements collected for prenatal and clinical patients/services are listed below in Table 1. (Laboratory services are not charted).
A physical (clinical or laboratory) facility or site which has on its staff (or has arranged for consultation from) one or more of the
Presently, the Minimum Data Set collection is set up to gather purely descriptive data without cross tabulations or denominators. Agencies Providing Data Agencies which provide data for the CORN Minimum Data Set collection are described by the Committee as reporting units. A reporting unit has been defined as follows:
following appropriately qualified medical geneticist, professionals: cytogeneticist or laboratory director. This facility or site offers, as its major or exclusive service, specific genetic testing, diagnostics, counseling, and/or disorder management services. Satellites of such a facility, i.e., alternative locations where staff provide intermittent genetic services, should be listed under, and their workload reported by, the supporting central facility.
Each data element was selected for a purpose. Many months of discussion and compromise preceded the final selections. The Committee attempted to adhere to already established standards of previous data collections. For example, it was decided that data collected on race should follow the format of the U.S. census. This standard
It is the goal of CORN to identify and list all such units and to collect and report data on their services. Genetic services rendered incidentally in general medical practice are not included. Reporting units provide data for the MDS Report on a voluntary basis.
TABLE 1 Prenatal Patients/Services
J Clinical Patients/Services
Age of Patient
Age & Sex of Patient
Race/Hispanic Origin of Patient
Race/Hispanic Origin of Patient
Urban/Rural Residence of Patient Primary Indication for
Urban/Rural Residence of Patient Count of New/Repeat Patients
Prenatal Service Counts of Services Provided
Counts of Services Provided
Diagnostic Evaluations Completed/Not Completed
Reasons for Referral and Final Diagnosis Count (Pilot Project)
425
]
Methodology
The Great Plains Genetics Services Network (GPGSN) obtains data in aggregate form from participating states. Once data are compiled at the state level they are directed onto the regional level (in diskette form) for further compilation, review and regional reporting.
CORN MDS Collection Packet The CORN MDS collection packet is the tool utilized to collect the MDS elements. This packet consists of background, instructions and thirteen separate data collection forms (6 prenatal, 6 clinical and 1 laboratory). The Committee reviews and revises the MDS collection on an annual basis to insure that the collection is satisfying the reporting needs and the objectives of the CORN data collection effort. Revisions of the MDS collection forms are made only in an effort to simplify, clarify and/or update. An attempt has been made to keep the MDS data elements and definitions as close to the original request as possible.
Implementation of the MDS Collection The MDS collection packets, after Committee revisions, are distributed to the Regional Data Coordinators of the ten CORN regions along with mailing labels for each reporting unit from the MDS database and a draft form letter for personalization. Eich region has a regional Data Committee and Data Coordinator who decide the most appropriate manner in which to collect the CORN MDS data elements. In addition, each region is allowed the option of adding data elements to the basic MDS request. CORN supports any manner of data collection and any addition of data element requests as long as data collected are accurate and are capable of being aggregated into the CORN MDS categories.
The Genetics Network of the Empire State (GENES) receives data in hard copy form and compiles it into a database at a central computer. Data are used to generate feedback reports for the region.
*
The Great Lakes Regional Genetics Group (GLaRGG) is creating a custom designed software application program entitled "The CORN Kernel" (TCK). Reporting units will utilize this software for clinical database maintenance and supply (in diskette form) aggregate data for the region.
The Mid Atlantic Regional Human Genetics Network (MARHGN) has its own minimum data set collection established and produces regional reports.
*
The Mountain States Regional Genetics Services Network (MSRGSN) is working toward compiling data from participating reporting units via a network computer system.
* The New England Regional Genetics Group (NERGG) collects data on an individual reporting unit basis. Some reporting units utilize a software system designed specifically for the collection of the CORN MDS data elements and additional data items requested by the NERGG region. NERGG also produces regional reports. *
The Pacific Southwest Regional Genetics Network (PSRGN) has a centralized computer collection system for collecting California prenatal data.
Computer Compilation of Data into a CORN MDS Report Minimum Data Set data elements are entered, compiled and stored on an IBM compatible 286/AT personal computer. Data are provided to the CORN Data Coordinator by each of the ten regional Data Coordinators either in state tallies or by individual reporting unit responses. An application program, custom designed in dBase IV, compiles the CORN MDS data elements entered. This application program is named the CORN Minimum Data Set Collection System.
Because of the uniform definitions of variables, any variety of procedures may be employed in the individual regions. A few examples of regional data collecting procedures are as follows: >
*
Upon data entry, the Data Coordinator inspects data collected for accuracy and completeness. Data are compared with previous year's collections for data integrity. Once data are entered from the hard copies, the compiled totals are backed up daily onto floppy diskettes and stored in a separate location from originals and computer harddrive.
426
After data elements are compiled into individual state totals, the totals are translated into Lotus 123, a software application spreadsheet program. The Lotus 123 software application program is versatile and offers ease of manipulation of the data to create data tables, charts and graphs. The text of the MDS Report is written and combined with the tables, charts and graphs. Drafts of the MDS Report are reviewed by Regional Data Coordinators and caveats (explanations to prevent misinterpretation) with respect to specific responses, are added.
There were 69,839 clinical visits by non-pregnant patients with slightly more females than males. The majority of these services were for children under 14 years of age. Of those identifying race, 3/4 of the patients were white and 1/4 were non white. About 1/6 of the whites were Hispanic. There were 95,691 clinical genetic services, 11,730 procedures and 13,743 other services provided. The final MDS Report is available upon request from CORN, for detailed analysis.
CORN MDS Report Composition Data are compiled on a state by state basis. The MDS Report is categorized into two portions: 1) National Data; and 2) Regional Data. National data are regional data totals compiled into a national total. Regional data are state totals
Recommendations Regarding Data Reporting The recently published Healthy People 2000: National Health Promotion and Disease Prevention Objectives, Full Repotl31 places a great deal of emphasis on data collection as the means of evaluating progress toward meeting the Year 2000 Objectives. An entire section of the report is devoted to surveillance and data systems. Objectives throughout the report refer to baseline data (or the lack thereof) for monitoring progress. In addition, two major objectives relating to genetics services are included under Maternal and Infant Health. One relates to prenatal care and identifies the tracking and usage of MSAFP tests and the second relates to newborn screening and refers directly to the CORN Newborn Screening Report (which will be the subject of a future paper). It should be noted that the availability of data from the CORN data collection projects insured that genetics was included in such a significant document.
Discussion
compiled into their respective regional totals. There are two versions of the MDS Report: Version I, the Basic MDS Report which supplies only one Regional Data packet (the Regional Data packet for the region where the report recipient is located), and Version II, the Comprehensive MDS Report which supplies the National Data portion of the report plus all Regional Data packets. CORN MDS Report Distribution Once the CORN MDS Report is finalized, it is distributed to the 10 Regional Data Coordinators with the new year's MDS collection packets. The Regional Data Coordinators distribute the final report to all participating Reporting Units. The CORN Data Coordinator distributes the report to all State Health Off'icers/Directors and to Federal
The national effort to provide quality genetics services cannot expect to receive appropriate public and financial support if the descriptive data on patients and services cannot be provided and the outcome of services provision cannot be demonstrated. The CORN data collection and reporting effort, although not yet a complete system, has taken a major step in providing a national database which will provide a reasonable baseline from which to monitor change[41.
Genetics Services Branch Personnel. The public may also receive an MDS Report upon request. Overview of MDS Report Results CORN has identified approximately 400 reporting units (private and public) and over 240 (60%) responded to the 1989 MDS request. The respondents reported a total of 124,052 prenatal patients which received 302,847 individual prenatal clinical services and 481,667 laboratory tests. Sixty two percent of these services were for advanced maternal age and fourteen percent were for abnormal alphafetoprotein levels in maternal blood (maternal serum alphafetoprotein or MSAFP). There were 6,562 fetal abnormalities found amongst those with completed evaluations.
Data Analysis In order to encourage full participation and
submission of data from reporting units, the Committee decided not to develop an extensive analysis of the minimum data provided. Instead, the Committee has chosen to view the project as a scheme which generates a reliable resource for
427
individual researchers and administrators to use in evaluating and developing health policy.
Accomplishments The establishment of a national system of data collection based on the ten regional networks has been one of the major accomplishments of CORN during the 1980s. CORN generates a tremendous quantity of high quality information for a relatively small cost when compared to other data collection efforts. If additional resources were provided many problems regarding the Minimum Data Set collection failings could be addressed and the data collection effort could be expanded.
Currently, there are selective states and regions where the data are sufficiently complete and accurate to serve as a valid planning and evaluation resource. Where state health departments have taken the initiative to collect data or mandatory reporting systems exist, the MDS can be used for valid comparison. Two examples are the Genetics Network of the Empire State (GENES), operated by New York State, which provides a rather complete and detailed set of data from state funded clinics, and California which has a complete collection of prenatal clinical services mandated by law.
The Future The CORN data collection and reporting project should continue as an important resource in evaluating progress toward the Year 2000 Objectives. The structure and organization for maintaining this important data collection effort are in place and fiscal support should continue throughout the remainder of the CORN project.
Limitations There are many data reporting obstacles. When reporting is voluntary and not mandated, it tends to be incomplete. Most public funded providers participate, but private providers tend not to report and are thus underrepresented.
The CORN MDS collection is the only data available for what is the most rapidly expanding area of health care. As such, it fills a unique need and deserves to be improved and widely disseminated. The data system must also continue to respond to newly identified needs for data collection, but at the same time maintain its stability and continuity.
Another major problem encountered is that data collecting efforts are inadequately funded and staffed. Data collecting is generally treated as an additional burden on top of other responsibilities. In addition, regions that have already established a data collection program have a certain degree of resistance when asked to alter their established program to accommodate incorporation of their data into the national totals.
The CORN MDS data collection system provides a valuable framework upon which a reliable computerized national database can be built. Much, however, remains to be done and we hope this important project will continue even in the face of the ever-present threat of funding cuts.
1. USDHHS (1984) Summary Report: Future Directions of the National Genetics Program Workshop.
2. Amato, RS (1985) Council of Regional Networks for Genetics Services: Report of a Meeting Held July 8-9, 1985, Georgetown University, Washington, DC. 3. USDHHS (1990) Healthy People 2000, National Health Promotion and Disease Prevention Objectives Full Report, with Commentary. 22:549-562. 4. Meaney, FJ (1987) Databases for Genetic Services: Current Usages and Future Directions. Journal of Medical Systems 11:2227-232.
428
