General Information
About SRRHIS
HEALTH INFORMATION SYSTEM INTRODUCTION
HISTORY
GOALS OF SAVANNAH RIVER REGION HEALTH INFORMATION SYSTEM
MAJOR ACCOMPLISHMENTS
PROPOSED ACTIVITIES
SCIENTIFIC ADVISORY COMMITTEE
COMMUNITY RELATED ACTIVITIES
STAFF INFORMATION

HEALTH INFORMATION SYSTEM INTRODUCTION

The association of adverse health outcomes with environmental and occupational hazards in discrete geographic areas and populations is a growing public and professional concern. This concern must be addressed carefully and substantially. The program which addresses this association must include a high quality surveillance system, a scientifically credible assessment and analysis process which includes strict protocols and methodology, and a trusted community outreach program to convey the results and information. Since 1991, the Savannah River Region Health Information System (SRRHIS) has established and maintained a surveillance program designed to address and respond to the specific concerns of the Savannah River Region population. To this end, SRRHIS is organized around three major components: The first years of the program concentrated on the establishment of credibility in the communities of the Savannah River Region and the organization of a high quality cancer registry operation. The formation of a Steering Committee and the education of its members about surveillance methodology were major focus issues for the initial years. Likewise, the establishment of a major surveillance system, such as SRRHIS, required government agencies, and research institutions. The collaborative links are particularly important because the catchment area for SRRHIS crosses geo-political boundaries. These efforts have proven successful. Cancer cases have been reported through the system and a 3-year cancer incidence report has been accepted by the committee and distributed. SRRHIS has operated under proposed workplans for each of the first six years and will continue to do so in the next phase.

SRRHIS has established itself as a credible and viable information system for the residents of the Savannah River Region. As indicated by a resolution from the Steering Committee and letters of support, SRRHIS has been identified as a community and professional resource, fulfilling a critical need for accurate information. With growing concerns from the population and workers, SRRHIS will provide the most logical and efficient mechanism to respond to and address the multiple aspects of the surveillance needs. Likewise, understanding the emerging patterns of diseases, such as leukemia, esophageal and cervical cancers, require research which depends on a high quality resource for investigations.

SRRHIS has maintained the goal to "establish and maintain a data analysis process for identifying health risks to populations in the region through epidemiological studies and surveillance". Because the majority of the efforts are founded on quality control and comprehensive data collection, data analysis and reports have been mostly of a descriptive nature. The next step will involve a surveillance-based epidemiologic approach to the population studies. Independent, as well as collaborative, studies of the population in the Savannah River Site Region will be encouraged by the increasing numbers of quality-controlled cancer cases.

The next phase of SRRHIS will use the established surveillance system and attendant credibility, and will organize a data analysis plan to conduct epidemiological studies, provide community-based data, and evaluate trends.
 

HISTORY

The Epidemiology faculty of the Medical University of South Carolina (MUSC) Department of Biometry and Epidemiology decided in the middle to late 1980s to assess the feasibility of developing a cancer registry in the Tri-County area. It was recognized that the success of the effort would depend on the cooperation of individual hospitals and laboratories. The State of South Carolina has never required the reporting of cancer cases. The nine Charleston area acute care hospitals, including the two Federal hospitals (Veterans Administration and U.S. Navy) were contacted early in 1990 about their willingness to participate in this registry program.

The cancer registry was named the Tri-County Central Cancer Registry of South Carolina (TCCRSC) and began collecting information from the area hospitals in the summer and fall of 1990. All cancers newly diagnosed on or after January 1, 1990 were included in the Registry. The Registry was accepted into membership of the American Association of Central Cancer Registries in 1990.
 
 

Also in 1990, the Epidemiology faculty, in collaboration with the faculty of Emory University School of Public Health, submitted a grant application to the U.S. Department of Energy (DOE). It proposed to develop a cancer registry incorporating counties within 50 miles of the Savannah River Site (SRS) and those downstream to Beaufort and Savannah. The Emory University faculty already had a state-of-the-art SEER (Surveillance, Epidemiology, and End Results) cancer registry supported by the National Cancer Institute. The DOE approved the proposal and funded it for three years, beginning April 29, 1991. The project was titled the "Savannah River Region Health Information System (SRRHIS)."
 

GOALS OF SAVANNAH RIVER REGION HEALTH INFORMATION SYSTEM

MAJOR ACCOMPLISHMENTS

Since 1991, a major focus of SRRHIS has been the establishment of a credible and recognized information system for the investigators and the communities of the Region. Several mechanisms have been employed to assure their recognition. The Steering Committee has received constant re-enforcement of cancer registry operations and data quality. In addition, data and reports have been reviewed by the Committee. The appreciation of SRRHIS is demonstrated by the Committee with a resolution to continue the study of cancer in the Region.

SRRHIS has been a constant collaborator with scientific investigators throughout the country and world. These work arrangements have resulted in the recognition of SRRHIS as a valid research resource. Letters of support from investigators across the country indicate the importance of SRRHIS assessments, as well as the needed future collaborative efforts. SRRHIS data has been used in presentations of clinical investigations, national epidemiology and environmental health meetings, and cancer meetings such as the American Society of Oncology and the North American Association of Central Cancer Registries.

Data quality has been a major objective of SRRHIS. In 1991, it was decided to utilize high level quality protocols and collaborate with the SEER registry investigators at Emory University. The employment of these protocols allow SRRHIS to compare disease rates with the SEER populations. In addition to hosting numerous quality control workshops for hospitals and cancer clinics, SRRHIS has been an active participant in the North American Association of Central Cancer Registries (NAACCR). Active roles include being a member of the Data Evaluation and Publication Committee and Editor of NAACCR Newsletter. SRRHIS was an invited participant in the “Workshop to Develop Recommendations for a National Cancer Public Data Set”. In addition to numerous scientific presentations on data quality, SRRHIS was a leader in the assessment of data exchange among different registries. The impact of data exchange and need for quality control was presented in a manuscript.

SRRHIS has established a comprehensive distribution system for reporting data. In addition to the Steering Committee, data results have converged to the community via community presentations, newsletters, reports and the internet. Data is provided to health care providers via newsletters, technical reports, the internet and presentations. SRRHIS data is presented to the scientific community via presentations and publications.

Mortality Reports - Two cancer mortality reports were produced and distributed by SRRHIS. These reports described cancer mortality by type, race-sex and county for Georgia and South Carolina. The reports have been widely distributed and utilized in the scientific and lay communities.

Three-year Incidence Report - A three-year cancer incidence report was produced by SRRHIS which describes cancer incidence in the Savannah River Region . This report is the first assessment of cancer incidence in the region, as well as in South Carolina. The findings have been distributed through the media, scientific programs and the internet. The rates have been used to identify areas of focus for future study.

Childhood Leukemia Study - As childhood leukemia is a major concern of the population around any nuclear facility, this type of cancer is one of the first to be investigated in detail. SRRHIS established a collaborative analysis project with epidemiologists of the German Institute for Radiology/Hamburg. Using similar assessment methodology, the patterns of childhood leukemia in Germany and the Savannah River Region were assessed. The results of this work was presented at the British Nuclear Energy Society meeting.

PROPOSED ACTIVITIES

SRRHIS will design, implement and coordinate several population-based epidemiologic studies in the Savannah River Region during the next phase. These efforts will be the result of independent and collaborative studies. Three major efforts are proposed:

1) To produce a Five-Year Cancer Incidence Report

2) To evaluate the geographic patterns of cancer and associated conditions in the Region

3) To analyze cell types of cancers in the Region

Five - Year Incidence Report - While the 3-Year incidence report has been a tremendous resource for the citizens and health care practitioners in the region, some limitations also exist. Three years of data only allowed regional comparisons of rates. The addition of two years in a five-year report would allow data to be presented on smaller areas, age groups. Such, more precise calculations will provide better descriptions of cancer incidence. For example, stage of disease is a critical consideration in population cancer control. This type of analysis will provide additional details on populations at risk and cancers requiring additional study. For example, cervical cancer among African-American women and esophageal cancer among African-American men.

SRRHIS will employ a series of routine and traditional analyses and produce reports using traditional cancer related indicators such as cancer incidence, cancer type, stage of disease, cell type and survival. The results from this report will be distributed and presented to the community as well as cancer control and scientific investigators.

The final format and layout of the five-year report will be based on the recommendations of the Scientific Advisory Committee. However, anticipated components include the age-adjusted rates of the Region compared with the SEER and non-metropolitan SEER rates. Staging and small geographic areas will also be included. This report will be generated and distributed in hard copy and via the internet. In addition, at least two scientific manuscripts would be anticipated from this analysis and report. The Report and publications will describe health outcomes in the Region and identify populations at risk.

Implementation of Special Analyses and Data Assessment Programs - SRRHIS will collaborate with other investigators and programs to implement new and updated cancer data analysis programs. For example, a collaborative arrangement will be made with the Centers for Disease Control to use a geo-graphic analysis program such as “Headbanging”. This program “smooths” the variation of rates in small geographic areas.

An example of this application involves the assessment of cancer along the routes being used to transport spent fuel to SRS for long term storage. The residents along the route are concerned about possible health risks. SRRHIS data can establish baseline levels and monitor changes.

SRRHIS will conduct analyses of specific cancers in conjunction and in collaboration with other cancer investigators. For example, clinicians have recognized excessive numbers of cases of esophageal and cervical cancers in the populations of the Region. These observations are confirmed by SRRHIS incidence data. These cancers can be assessed in detail, such as assessment of stage and cell type, and analyzed to determine reasons for disease progression, as well as the study of the etiology. Leukemia is another type of cancer to be studied in detail. SRRHIS will team up with cancer researchers to further investigate these cancers.

Geographic Patterns of Disease- The Five-Year Incidence Report will address issues of excess cancer rates in certain areas. Another major issue is the geographic patterns of disease and associated factors. One particular completed assessment involves childhood leukemia cases in the Region with consideration of water sources, water basins, population demographics, and socio-economic status. This objective will utilize the Geographic Information System (GIS) at the Office of Research and Statistics as well as the multiple databases including hospitalization, medical care providers, census data, Medicare data, Medicaid data, and environmental data information. The GIS includes the smallest area of assessment at the census tract area. The other databases can be incorporated into the GIS for assessment of multiple components.

The details of the analysis approach will be directed by the Scientific Advisory Committee. However, the focus will include cancers of concern to the citizens in the region. A population survey will be completed for the Committee to gauge the details of these concerns.

At least one scientific manuscript would be the anticipated product of this objective. The patterns of several different cancers would be assessed using the GIS with consideration of geological, environmental, socio-economic and demographic characteristics of the populations. In addition, the system will also allow the assessment of other conditions and co-morbidity.

Assessment of Cancer Cell Types - Excess cancer rates and patterns of disease will be analyzed in the first two objectives. A third assessment involved classification of cancer cases by cell types. Such an analysis will aid in the study of the etiology of cancer in the region. The Scientific Advisory Committee will recommend the various cancers and types to be analyzed. For example, adenocarcinoma of the esophagus by the age-race-sex groups. These rates will be compared to other population-based registries throughout the country. Varying rates might be indicative of further study in the different populations of the region. At least two scientific publications will be produced as products of the activities of this objective.

SCIENTIFIC ADVISORY COMMITTEE

The Scientific Advisory Committee will be a major resource for the proposed activities of this phase of the project. The Committee will consist of experts with a specific interest in the Region and will meet twice during the study period. Members of the Committee include:

Dr. Scott Davis - Fred Hutchinson Cancer Center - Seattle, WA. Dr. Davis is an epidemiologist with considerable population assessment experience around the Hanford site.

Dr. Mark Green - Director, Hollings Cancer Center, Medical University of South Carolina, Charleston, SC. Dr. Green is an international expert on cancer etiology and study. He has considerable experience in the study of cancer sub types with a particular focus on lung cancer.

Dr. David Hoel - Distinguished Professor of Biometry and Epidemiology, Medical University of South Carolina, Charleston, SC. Dr. Hoel’s expertise includes risk assessment and exposure to low level radiation.

Dr. Kenneth Kopecky - Fred Hutchinson Cancer Center, Seattle, WA. Dr. Kopecky has considerable experience in population assessment of thyroid cancer around the Hanford site.

Dr. Jonathan Liff - Director, Georgia Cancer Registry, Atlanta, GA. Dr. Liff is a cancer epidemiologist at Emory University and has been an investigator with SRRHIS since 1991. He is also the Director of the Atlanta SEER Registry.

Dr. Bonnie S. Richter - Epidemiologist, Department of Energy, Office of Epidemiology and Health Surveillance, Washington, D.C. Dr. Richter's area of expertise is population-based studies to environmental exposures.

Dr. Heather Stockwell - Epidemiologist, Department of Energy, Office of Epidemiology and Health Surveillance, Washington, D.C.

Dr. Dee West - Director, Northern California Cancer Center, Union City, CA. Dr. West is a cancer epidemiologist with considerable expertise in the study of cancer rates in various populations. In addition to his expertise, Dr. West will collaborate in the comparison study of cancer rates.

COMMUNITY RELATED ACTIVITIES

A major goal of SRRHIS is to become a source of environment/health-related information for the residents of the Savannah River Site (SRS) region. While the task is formidable, a strong beginning has been made with the formation of the SRRHIS Steering Committee, the SRRHIS Newsletter, and the sponsorship of community meetings around the SRS region.
 
 

The Steering Committee is composed of multi-agency/multi-disciplinary professionals and residents of the Savannah River region. It serves in an advisory capacity to the Project Director. The 12 committee members constitute a variety of backgrounds representing Georgia and South Carolina. The Committee meets quarterly, rotating the meeting place throughout the Savannah River region. These meetings are open to the public and notices are placed in local newspapers announcing the time and location.
 
 

The SRRHIS Newsletter is published quarterly and distributed throughout the catchment area to approximately 4,000 interested individuals. The newsletter provides information concerning SRRHIS operations, health related facts, as well as data results.
 
 

Community Meetings are held in the SRS region to explain the aims and limitations of SRRHIS activities, and to hear suggestions and advice from area residents. Meetings are held in various formats, including town meetings, civic clubs, school classes, and church groups. Written invitations to meetings are sent to those on the SRRHIS mailing list and notices are placed in local newspapers. The SRRHIS staff is also available to other groups interested in hearing about SRRHIS related activities.

Through these and other efforts, SRRHIS has become a source of credible information/referral for residents of the Savannah River region.
 
 

The SRRHIS reporting area provides population-based information for all counties within 50 miles of the Savannah River Site as well as those downstream to Beaufort and Savannah. Other selected distant counties will serve as comparison areas.
 
 

For further information regarding the Savannah River Region Health Information System (SRRHIS), please E-Mail, write or call:
 
 

Ms. Janis S. Koenig, M.Ed.
Program Coordinator
Savannah River Region Health Information System
1134 Rutledge Tower
Medical University of South Carolina
171 Ashley Avenue
Charleston, SC 29425-2503
Telephone: (803) 876-1140 Fax: (803) 876-1143

STAFF INFORMATION


SRRHIS STAFF, MEDICAL UNIVERSITY OF SOUTH CAROLINA, CHARLESTON, SOUTH CAROLINA

Daniel T.Lackland, Dr.P.H., is Associate Professor of Epidemiology at Medical University of South Carolina (MUSC) and Principal Investigator of the Savannah River Region Health Information System (SRRHIS).

John B. Dunbar, D.M.D., Dr.P.H., is Professor of Epidemiology at Medical University of South Carolina (MUSC) Consultant to the Savannah River Region Health Information System (SRRHIS).

Janis S. Koenig, M.Ed., is Program and Community Activities Coordinator of the Savannah River Region Health Information System (SRRHIS).

Lisa A. Westerberg is the Project Secretary of the Savannah River Region Health Information System (SRRHIS).

Please address any questions or comments to Jan Koenig.