SRRHIS Newsletter

PUBLISHED BY THE SAVANNAH RIVER REGION HEALTH INFORMATION SYSTEM
Vol.2. No.3	MEDICAL UNIVERSITY OF SOUTH CAROLINA	October 1993

CONTENTS
FROM THE EDITOR'S DESK	LOW COUNTRY GENERAL HOSPITAL
SRRHIS REPORT	SOUTH CAROLINA CENTRAL CANCER REGISTRY
SRRHIS BIRTH DEFECTS REGISTRY	JULY STEERING COMMITTEE MEETING REPORT

We hope all of you had a relaxing summer and are looking forward to the arrival of fall.

The SRRHIS staff had a busy but enjoyable summer visiting the participating hospitals, hosting community meetings, and speaking to various community organizations. The community information and hospital related activities are critical elements of the SRRHIS project and ones which we greatly enjoy.

In this issue, Low Country General Hospital is featured in the Hospital Showcase Column, and our guest columnist is Ms. Susan Bolick, MSPH, CTR, newly appointed Cancer Registry Administrator of the South Carolina Central Cancer Registry, SC Department of Health & Environmental Control.

Your comments, suggestions and questions are always welcome and help us keep the newsletter interesting and informative.

I had a good laugh the other week when I was having lunch with the Ridgeland, South Carolina Rotary Club. Martin Sauls, Program Chairman (and County Coroner), had invited me over to speak to the Club about the SRRHIS program, in particular the cancer registry and the planned birth defects registry. In introducing me to the 35 members present, he made note of a small item in my biographic sketch, namely that I had assisted in the initiation of the Hollings Oncology Center at MUSC. He looked up from the page he had been reading from, scanned the audience slowly, and asked, "Do you know what 'oncology' is?" After a slight pause, he answered, "It's the study of collards." the house roared and so did I. Martin's needle was almost prophetic; I learned two weeks later that MUSC was changing the name of the center to Hollings Cancer Center.

Following the Rotary meeting I went by to visit with Mark Greenberg, Administrator of the Low Country General Hospital in Ridgeland. The Hospital has been one of the SRRHIS program supporters since the beginning, and continues to be a good supporter. It became clear in talking to Mark that he has been busy seeking to establish a dynamic health care program for this predominately rural area. And he has met with considerable success judging from the grant moneys he raised to support outreach programs for elderly and prenatal care.

This luncheon and the visit with Mark Greenberg show very nicely a personal side of our community information and hospital related activities. We enjoy being out in the community talking to anyone or any group which is interested in hearing about our program. We are fortunate in this respect because information dissemination and the promotion of public awareness of the project are critical elements of the SRRHIS program.

At our July Steering Committee meeting, we were notified officially that the South Carolina Department of Health and Environmental Control (DHEC) is starting a statewide cancer registry. We were pleased to know this officially, and to hear that the decision to establish it at this time was based in large measure on the success of the SRRHIS registry. Apparently, there is a great deal of interest at the national level in promoting state registries where none exist, and the Centers for Disease Control and Prevention (CDC) is funding a DHEC effort in which cancer registration is a critical component for program evaluation at a later time. We at SRRHIS are glad to collaborate with DHEC in this effort because it will benefit the public, and it will be mutually beneficial technically to both DHEC and SRRHIS. In concept the collaboration is wonderfully simple; we will collect cancer cases in the SRRHIS counties, and DHEC will collect them in the remainder of the state. In this way, DHEC will be able to save money and effort by not duplicating an activity already underway, and the hospitals will be spared another data collection. There are further benefits, of course. We can share technical skills and computer resources and there will be an opportunity to combine and compare the stateÕs data with that of Georgia (with which SRRHIS is working through our collaboration with Emory University), resulting in a larger and more stable data base for estimating cancer rates. As far as I know, there is no other instance in the Nation in which a cancer registry crosses a geopolitical boundary (a state line).

I thought that you might be interested in knowing that our registry activities are known and discussed by scientists and public health professionals beyond our local area. The recent travels of Dr. Daniel Lackland, the SRRHIS Co-Director for Cancer, illustrate this point. In June he was invited to Munich, Germany to discuss locally active research projects related to environmental health risk. The cancer registry was among the projects discussed. It was of particular interest to them because a compatible Germany-based cancer registry includes cases around nuclear production plants in that country, making it possible in the future to compare the German regional rates to those in our area. Dan also spoke of the registryÕs potential benefits to a group of Baylor University medical scientists meeting in Houston in August. Also present at this latter meeting was a member of our Steering Committee, Dr. Curtis Hames, a physician/scientist of Claxton, Georgia.

We will be pleased to accept a speech invitation anywhere within the SRS region from Augusta and Aiken to Beaufort and Savannah. If you or someone you know wants to hear more about our project, let us know. Our phone number is (803) 792-4081. Call Ms. Koenig, SRRHIS Administrator, or me to make an appointment.

Dr. Dunbar is a Professor of Epidemiology at MUSC and Principal Investigator of SRRHIS.

One principal goal of the SRRHIS project is to develop a system for monitoring birth defects among the babies born to residents of the catchment counties. The aim is to establish a registry which will yield incidence data for selected congenital malformations of a quality comparable to the SRRHIS cancer registry. To this end, the SRRHIS staff has consulted closely with the staff at Birth Defects and Genetics Diseases Branch, Centers for Disease Control and Prevention (CDC).

The CDC recently celebrated the 25th anniversary of its Metropolitan Atlanta Congenital Defects Program (MACDP) which actively monitors the birth defects incidence in the five contiguous counties. Several case workers from the MACDP periodically visit the hospitals in the five counties to screen, ascertain, and collect data on a comprehensive range of major birth defects in the newborns and infants up to the age of one year. The MACDP incorporates quality control at different stages of the data collection system, including a review of the abstracted information by a dysmorphologist (clinical expert) to confirm the diagnoses. This grandfather of the birth defects surveillance system has been emulated by other states which have established registries in the last two decades. The SRRHIS birth defects registry will also model itself after the MACDP to achieve data collection of high quality so that data from these systems can be utilized for future statistical comparisons. The MACDP staff have agreed to continue providing consultation throughout the development and operation of the SRRHIS registry.

Of particular interest to the SRRHIS birth defects registry are those defects thought to be related to radiation and toxic chemical exposure, such as neural tube defects (e.g. spina bifida, microcephaly), DownÕs syndrome and congenital hypothyroidism. However, other major birth defects, such as congenital heart defects, will be recorded as well because we are not certain whether some of the environmental elements may be associated with these defects. Some defects, such as most neural tube defects and limb deformities are easily identifiable at birth. But others, such as congenital heart defects, tend to be diagnosed after the babies are discharged from their birthing hospitals. Therefore, we will continue to collect birth defects incidence data that are diagnosed during the entire first year of an infantÕs life.

Approximately 3% of all live births have a major birth defect. At this rate, we can expect to observe 1,000 cases of live births with a birth defect every year in the SRRHIS counties. Because of the small number of birth defect occurrences relative to the number of live births, we will need to accumulate incidence data for several years to provide meaningful statistics, especially for any given defect. To help us accumulate data more quickly, we are studying the feasibility of collecting adverse birth outcomes from past years. This retrospective collection was not possible in the case of cancer data, but our CDC consultants suggested that we work with several of the SRRHIS hospitals to determine the feasibility of beginning the registry at an earlier reference date. If feasible, we will conduct case identification (in the same manner as the prospective approach) of babies with birth defects born up to five, possibly ten, years ago. The feasibility will depend on the availability and accessibility of records kept at the hospitals in the SRRHIS counties. Such a retrospective approach will allow us not only to present valid incidence statistics earlier, but also to study trends, if any, of defects of interest.

We have observed strong community interest in establishing an active birth defects registry, and at the last SRRHIS Steering Committee meeting in April, the members endorsed the project with enthusiasm. Staff members of the Birth Defects and Genetics Diseases Branch, CDC, support the SRRHIS endeavor and will provide technical consultation.

The grant proposal was submitted to DOE in August. Contingent upon funding by the DOE, the project will begin no later than the Spring of 1994.

Dr. Palesch is Assistant Professor of Biostatistics at MUSC.

Low Country General Hospital is a 31 bed acute care hospital which opened its doors to the residents of Jasper County during October, 1971. The hospital, which is located in Ridgeland is the only hospital within the county. Its service area encompasses Jasper County, a 662 mile area located in the southeast portion of the state. In 1991, operation of the hospital was transferred from the auspices of the county to a management company, Medical Services of America.

As with any rural hospital, the hospital has had it ups and downs during the years. Since 1991, the hospital has been on an upswing. The expended services offered to the community have included Labor and Delivery with an OB/GYN program, CT Scan, ultrasound, a hospital based home health agency, and limited transportation to those patients who otherwise could not obtain health care services. Several of these additional services have been obtained via grant funding from various sources.

Several months ago the hospital reopened its Labor and Delivery services, which had been dormant since 1981. In the last six months approximately 60 babies have been delivered at the unit. The reopening of the unit has provided the staff, both within the unit and throughout the remainder of the hospital, with a positive morale boost by being part of a new program.

The staff of the hospital and the community look forward to and welcome future years of additional growth.

Mr. Greenberg is the Administrator/CEO of the Low Country General Hospital in Ridgeland, S.C.

Many years of planning, persistent committee activity, and recent financial support from CDC, have culminated in the establishment of the South Carolina Central Cancer Registry (SCCCR). As Dr. Catherine Harvey described in the April 1993 issue of this newsletter, the developmental stages of a state registry formally began in 1987 under the guidance of the South Carolina Cancer Control Advisory Committee.

Current funding is through the cooperative agreement between DHEC and CDC for the WomenÕs Cancer Screening Project, a portion of which is for surveillance of breast and cervical cancer. Application will be made for additional funding this fall to CDC and the Department of Defense, both with funds earmarked for states without central registries and for infrastructure development. With additional funding, plans are to expand the SCCCR into a full-fledged, population-based, all-site registry for South Carolina; all the while, examination of the need for enabling legislation will continue.

Utilization of existing resources within the state will be the main driving force behind this initial phase of the SCCCR. These resources include the nineteen existing hospital cancer registries, twelve of which are recognized as American College of Surgeons (ACOS) approved programs, and the Savannah River Region Health Information System (SRRHIS) regional registry program. The SRRHIS registry has paved the way for the state registry project.

Yet another exciting collaborative opportunity for the SCCCR will be to work with the state Division of Research and Statistical Services. In an attempt to become truly population-based, the SCCCR can tap into the hospital discharge dataset (currently under enhancement to include patient identifiers) which will be a valuable case finding resource within areas of the state where tumor registries are not yet established.

The first call for data is currently underway for 1991 cases from the computerized registry, hospitals and SRRHIS. Two other regional registry programs will participate in the SCCCR; REACH, a clinical trial recruitment project for the cancer patients of rural populations of North Carolina and South Carolina (Greenwood County and the six surrounding counties), and TSALIC, the Tristate Appalachian Leadership Initiative Coalition, covering three upstate counties (Anderson, Pickens, and Oconee).

Without enabling legislation mandating cancer reporting at this time, the initial success of the registry will rely heavily on the voluntary participation of the registry hospitals. State law protects hospitals from liability of release of information requested by the state health department, and all confidential information will be exempt from freedom of information requests. Much time and effort have been expended to provide assurance to the hospital administrators that confidentiality of the data will be maintained. A memorandum of agreement, approved by DHEC legal counsel, has been provided which is in accordance with S.C. Law 44-1-110.

Critical to the success of the SCCCR will be the quality of the data received. Twelve S.C. hospitals currently adhere to the ACOS criteria for cancer program approval, with the rest making strides to attain ACOS approval. Standardized coding and staging principles are used by these hospital registries. At the state level, extensive built-in cross-edits will be carried out on the data received through the software modified especially for the SCCCR by Medical Registry Services, Inc. (MRS), the software chosen by DHEC. MRS is the leading software vendor within the S.C. hospital registries with eight hospitals currently utilizing MRSÕ services. This will facilitate smooth, timely transfer of data from these hospitals.

The quality control program for the SCCCR will emphasize education and training for the hospital registrars. The first quality control activity of the SCCCR will be co-sponsorship with SRRHIS of a comprehensive educational workshop in January 1994 for persons involved with cancer data collection. Trainers will be provided from the formalized training program for registry personnel at the University of California at San Francisco. DHEC will hopefully be able to provide some financial assistance for registrants. This will be an excellent educational opportunity for registrars in our state. Other quality control activities will include abstracting audits, reabstracting and case finding studies next year. The SCCCR will also assist hospitals with fulfillment of the ACOS Patient Care Evaluation study requirement (two per year) in the future by providing statewide PCE formats. Technical assistance or consultation for ACOS survey preparation can also be provided. Several pre-ACOS survey consultations have already been conducted. Attainment of a meaningful, voluntary state cancer registry is an enormous task, however, through the utilization of our well-established registries, the experience of a successful regional registry program (SRRHIS), the guidance of the Cancer Registry Steering Committee, and a cooperative spirit, the success of the South Carolina Central Cancer Registry can be achieved.

Ms. Bolick is Cancer Registry Administrator of the S.C. Central Cancer Registry, SC Department of Health & Environmental Control.

The July 15, 1993, meeting of the Savannah River Region Health Information System Steering Committee was held in Beaufort, South Carolina.

As was noted in the last newsletter, three new members have been added. They are: Mrs. Ann Nevils, Blackville, SC; Dr. Frank Rumph, Augusta, GA; and, Dr. William Irby, Statesboro, GA. An orientation meeting was held at 5 pm to inform the new members of their responsibilities and to give them an overview of the cancer registry operations as well as the history of SRRHIS.

The regular meeting began at 7 pm with a discussion of previous committee business, the reading of the minutes and progress reports from Dr. John Dunbar (SC) and Dr. Jonathan Liff (GA).

Following subcommittee reports, Ms. Susan Bolick, newly appointed Administrative Director of the South Carolina Central Cancer Registry was introduced.

Ms. Bolick reported on the progress of the state registry. She said that a call for data would go out in August to selected (American College of Surgeons approved) state hospitals. To avoid duplication of reporting, all hospitals in the SRRHIS catchment area will continue to report to SRRHIS, which in turn will send the data to the state registry, maintaining the necessary confidentiality. Ms. Bolick also noted that the success of the SRRHIS program helped create an atmosphere conductive to eht start-up of a state registry, and the SRRHIS will continue to be a critical componentt of the State's cancer program.

The next Steering Committee meeting will be held at the Radisson Plaza Savannah, 100 General McIntosh Blvd., Savannah, GA, on Thursday, October 14, l993, 7-9 pm.

Ms. Koenig is Project Administrator of SRRHIS .

EDITOR: Janis S.Koenig

PRODUCTION EDITOR: Margery Swanson

Please contact the SRRHIS office regarding reproducing this Newsletter in whole or in part.

This material was prepared with the support of Department Of Energy grant number DE-FG09-91SR18217. However, its content does not neces sarily reflect the views or opinions of DOE.

by John B. Dunbar, D.M.D., Dr.P.H.

SAVANNAH RIVER REGION HEALTH INFORMATION SYSTEM

DEPARTMENT OF BIOMETRY & EPIDEMIOLOGY

MUSC/909 HOT

171 ASHLEY AVENUE

CHARLESTON, SC 29425

(803) 792-4081 FAX: (803) 792-1123