South Carolina Data Oversight Council
and Health Data Analysis Task-Force

Return to the State Grantee Information Page

Return to the Program Related Manuals, Reports, and Publications Page

Table of Contents:

1. Release of Unrestricted Data for Public Use
   
2. Release of Restricted Data
   
   1. Reports
      
      1. The New Report Review Process
         
      2. Previously Approved Report Review Process
         
      3. Reports Approved for Release by the DOC
         
   2. Public Use Encounter-Level Files
      
   3. Special Requests
      
      1. Health Data Analysis Task Force
         
      2. Confidentiality Contract
         
      3. Follow-back Studies
         

3. Release of Confidential Data
   
4. Never Releasable Data
   
5. Release of Data to Entities as Required by Law
   

1. Procedures for Maintaining Confidentiality of the Data
   
2. Procedure for Data Verification and Review
   
3. Fees
   

The Data Oversight Council (DOC) and the Health Data Analysis Task-Force (HDATF) believe in a policy of access that allows the broadest possible use of information resources for consumers, purchasers, health care facilities and professionals, researchers and other governmental agencies. The sensitive nature of these data necessitates that measures be taken to ensure the security of the data. This need for information security and trust in health care information systems, encompasses two fundamental goals: confidentiality and integrity. Confidentiality is the control over access to information and must assure absolute confidentiality for individual patients, and appropriate confidentiality for health care facilities and professionals. Integrity of the databases or the accuracy, reliability and timeliness of the information means information provided must be of the highest caliber.

Return to Table of Contents

PRINCIPLES.

1. The right to privacy is a basic right of every South Carolinian. The confidentiality of the patient shall be of the utmost concern. The release or re-release of data, in raw or aggregate form, that can be reasonably expected to reveal the identity of an individual patient will be made only when a mandate has been established by statutory law.

2. The policy of the DOC shall be to make determinations on requests for information in favor of access, subject to the specific limitations concerning confidentiality, security and accuracy.

3. The DOC believes that through the Office of Research and Statistics (ORS), educational programs should be designed and implemented to make its information understandable and usable to purchasers, facilities, other government agencies and the general public. This information will assist consumers in making informed health care decisions. The ORS will also provide additional information to government agencies and facilities to assist them in making health care policy.

Return to Table of Contents

DATA RELEASE PROTOCOL: CLASSIFICATION AND RELEASE OF DATA

In order to balance the principles of access and confidentiality, the Data Oversight Council has devised a classification scheme for the data elements collected under Section 44-6-170 as amended, Code of Laws of South Carolina, 1976. This classification scheme aims to: promote the use of accurate health data, provide equal treatment of data requesters and data providers, expedite the release process and encourage the release of the broadest spectrum of data elements without compromising confidentiality. The data elements are classified into four categories: unrestricted, restricted, confidential and never releasable.

1. Unrestricted data are those data elements that are available for general public use.

2. Restricted data are those data elements that require approval for release through the Data Release Protocol.

3. Confidential data elements are those that will only be released if a mandate has been established by statutory law.

4. Never releasable data elements are those that may be used for statistical linking purposes only.

In order to allow the identification of episodes of care and practice pattern variations by health care facilities and professionals, patient ID and health care facilities' and professionals' codes may be released in an encoded, non-traceable form that cannot be used to identify patients, health care facilities and/or professionals.

The current classification of data elements will be periodically reviewed. New data elements will be reviewed and classified by the Data Oversight Council (DOC). Until new data elements are classified, they will be considered restricted data and will be subject to the Data Release Protocol.

Return to Table of Contents

I. Release of Unrestricted Data for Public Use

Unrestricted data will be released upon request and is subject to the confidentiality provisions set forth in Final Regulations, State Budget and Control Board, Chapter 19, Statutory Authority: 1976 Code Section 44-6-170, Article 9, "Data Release For Medical Encounter Data & Financial Reports." Failure to comply with the confidentiality provisions in these regulations can result in legal action as specified in Section 44-6-180, as amended, Code of Laws of South Carolina, 1976.

Public use data are based on unrestricted data elements. There are three types of public use data: standardized public use file(s), customized public use file(s) and special analyses. The standardized, annual public use file(s) contains patient level data from various facilities and is available for a variety of time periods. The ORS can also compile a customized public use file based on unrestricted data elements. Finally, the ORS may perform special analysis of the data elements in the public use file, as requested by the applicant.

Efforts will be made to present data elements in a manner that balances the needs for public information and confidentiality. For example, age will be reported in place of date of birthand length of stay will be provided rather than admission and discharge dates.

The unrestricted data elements include:

• Length of stay
• Day of the week of admission
• Day of the week of discharge
• Month of discharge
• Discharge sequence number (to link episodes of care for the same individual)
• Admission source
• Admission type
• Patient age at admission in years (in days if under 1 year)
• Patient sex
• Patient race/ethnicity
• Urban/rural status of health care facility
• County of patient's residence
• Diagnosis codes (including coding methodology)
• Procedure codes (including coding methodology)
• Procedure day in relationship to admission date
• Major diagnostic categories
• E-codes (exclude E870-E876)
• DRG
• Expected payer classifications, i.e., Medicare, Medicaid, Champus, VA, Other Governmental, Private, Self-pay, and Other.
• Charges by summary revenue codes
• Units of service by summary revenue codes for room and board
• Physician specialty code (as adopted by the AMA)
• Health care professional classification
  • Attending
  • Surgeon
  • Other
• Patient discharge status
• Teaching status of the facility
• Level of emergency room
• Level of obstetrical service
• Other facility and professional characteristics that would not permit the identification of the health care facility or professional
• Annual hospital summary financial information
  • Gross revenue from Medicare
  • Gross revenue from Medicaid
  • Gross revenue from MIAP
  • Total gross revenue from service to patients
  • Government contractual adjustments for:
    • Medicare
    • Medicaid
    • MIAP
    • CHAMPUS
    • Other
    • Total
  • Total Non-government contractual adjustments
  • MIAP eligible
  • Total charity
  • Bad debt expenses, net of recovery

Return to Table of Contents

II. Release of Restricted Data

A. Reports

Historically, the ORS has released facility specific reports including market share and price comparison data (e.g., Health Choices). In addition, the ORS has prepared and released standard reports including zip code, market share, financial management, quarterly and year-to-date trends, patient origin, and out-migration market share which have been shared with originating facilities. Over the years, facilities have reviewed these reports to ensure their validity and accuracy. These reports will be available upon request and are subject to the Previously Approved Report Review Process. The ORS will continue to develop health care facility and professional specific reports. Before the release of any new, not previously DOC approved, health care facility and/or professional specific reports, the ORS and the DOC will follow the New Report Review Process to ensure the accuracy and validity of the reports.

Return to Table of Contents

1. The New Report Review Process

New reports, not previously approved by the DOC, will be developed utilizing the most current data available and will be provided to the affected health care facilities and/or professionals for review before release. The affected health care facilities and/or professionals will have 30 days to review these reports and to notify the ORS of any errors in data that would affect the accuracy of the report.

A. Errors in Data Reporting: Upon review of the reports, if health care facilities and/or professionals identify errors in reporting which were not discovered through normal editing procedures and which would change significantly the analytic results, as determined by the DOC, health care facilities and/or professionals will have 3 months to resubmit a corrected data tape. Health care facilities and/or professionals unable to correct their data may submit comments for inclusion in the report. In extraordinary cases, the health care facilities and/or professionals may request an extension from the DOC. The ORS will provide revised reports to health care facilities and/or professionals for an additional 14 days to review the revision of the reports and submit comments for inclusion in the release. Health care facilities and/or professionals may request an extension from the DOC.

B. Errors in Report Format or Methodology: Upon review of the report, if the health care facilities and/or professionals identify errors or enhancements in format or methodology which the DOC determines to substantially alter the results the ORS will make the necessary modifications within 30 days and provide health care facilities and/or professionals a 14 day review period to submit comments for inclusion in the release. After making the necessary adjustments, the ORS will provide the reports including the health care facilities' and/or professionals' comments to the DOC for approval and release. Subsequent releases of these reports will be subject to the Previously Approved Report Review Process.

Return to Table of Contents

2. Previously Approved Report Review Process

A. Previously approved reports will utilize the most current data available and be reviewed by the affected health care facilities and/or professionals. The affected health care facilities and/or professionals will have 14 working days (from date of receipt of the report) to review these reports and to submit comments for inclusion in the release. After making the necessary adjustments, the ORS will release the reports including the health care facilities' and/or professionals' comments.

Return to Table of Contents

3. Reports Approved for Release by the DOC

A. No report will be released if it cannot meet appropriate levels of accuracy as determined by the DOC.

B. Reports may not be reproduced by a third party without inclusion of affected health care professional and/or facility comments.

Return to Table of Contents

B. Public Use Encounter-Level Files

The ORS, with DOC approval, may develop public use files using restricted data elements including: patient zip-code and/or encoded non-traceable health professional numbers. The files shall be developed in such a way (e.g., excluding sensitive diagnosis and suppressing small cells) that patient and/or health professional confidentiality will not be compromised.

Return to Table of Contents

C. Special Requests

A special request is the release of restricted data elements in a manner that would allow the identification of patients and/or health care facilities and/or professionals. If the special request requires the ORS to aggregate the data by a restricted data element but not release the restricted data element, the request will be handled as a release of unrestricted data, so long as the confidentiality of patients and/or health care facilities and/or professionals will not be compromised.

All applicants for special requests will submit to the ORS the required documentation including, but not limited to the following: a list of the requested data elements, time frame for the requested data elements, a study protocol, intended uses of the data, policies for the protection of the restricted data elements, a Confidentiality Contract signed by the principal investigator and a detailed listing of individuals who will have access to the data. Data requests may include multiple years of prospective data, for the same research protocol, so that an application need not be filed for each year. It is the policy and practice of the ORS to provide technical assistance to applicants to assist in the application process.

Upon the receipt of a completed application, the ORS will determine if the purpose of the application is for research. If the application is for research purposes, the Health Data Analysis Task Force (HDATF), as specified in Section 44-6-170 of the South Carolina Code, will review the applications at its next meeting in the order received. The HDATF will forward the documentation and its recommendation to the DOC and notify the applicants by letter. If the DOC approves the request, the applicants will be notified and the ORS will comply with the data requests in a timely manner. If the DOC does not approve the request, it will supply the applicants with its rationale for disapproval. The applicant may revise its application based on the DOC comments and resubmit it to the ORS.

If an application is for non-research purposes, including legal, administrative or other actions that might directly affect patients, health care facilities and/or professionals, the application will be forwarded to the Chair of the DOC. The Chair will determine if the request will be handled directly by the DOC or forwarded to the HDATF for recommendation.

Health care facility and/or professional identifiable data elements approved for the applicant's use by the DOC may not be released in any product, publication or communication without the written approval of the DOC and review and comment by the affected health care facilities and/or professionals (as specified in Section 44-6-170, as amended, Code of Laws of South Carolina, 1976). All third party reproductions of the reports must include comments from the affected health care facilities and/or professionals.

If the application requests the linking of an ORS database with other database(s), the DOC will approve the manner in which the linkage is done.

The restricted data elements include:

• Admission date
• Discharge date
• Patient birthdate
• Medical record number
• Patient number: facility assigned
• Unique patient number: ORS assigned
• Procedure dates
• Carrier codes
• Patient zip-code (digits 1-5)
• Health care professional ID
  • Attending
  • Surgeon
  • Other
• Health care facility ID

Return to Table of Contents

1. Health Data Analysis Task Force

The Health Data Analysis Task Force (HDATF), as specified in Section 44-6-170, as amended, Code of Laws of South Carolina, 1976, will be a standing committee convened to review research requests for restricted health care data and review non-research requests upon DOC request. The HDATF will assist the DOC in such activities as periodically reviewing the appropriateness of the classification of data elements collected or maintained by the ORS. The task force will be composed of 7 members, one from each of the following groups:

• DHEC, appointed by the Commissioner of DHEC;
• SC Medical Association, appointed by its Board of Trustees;
• SC Hospital Association, appointed by its Board of Trustees;
• Insurance Industry, appointed by the Chief Insurance Commissioner of the South Carolina Department of Insurance;
• Business representative, appointed by the President of the South Carolina Chamber of Commerce;
• Statistician/researcher representing the higher education community, appointed by the Commissioner of the South Carolina Commission on Higher Education; and
• the Office of Research and Statistics, appointed by the Chief of the Health and Demographics Section.

The Chair of the HDATF will be appointed by and serve at the pleasure of the Chair of the DOC. The HDATF will need to meet at least quarterly. In the absence of extenuating circumstances, information concerning a member's absence from more than two consecutive meetings will be referred to the appointing body for consideration. A quorum for the HDATF will be a majority of its members appointed and serving. Re-appointments shall occur annually, or as deemed appropriate by the DOC or the appropriate appointing authority.

Due to the technical nature of the requests made to the HDATF, there are several areas of expertise recommended for members of the HDATF. The recommended qualifications include, but are not limited to:

1. Use and/or development of statistical models for the analysis of health policy,

2. Expertise in medical coding and billing issues,

3. Expertise in research and analytic methods,

4. Expertise in the economic and financial analysis of the health care field, and

5. Use and knowledge of computer software and hardware.

HDATF members need not be experts in all areas, but a familiarity with each would assist the HDATF in making informed recommendations to the DOC on the release and classification of data elements.

If the HDATF deems that a request for data could be better evaluated with assistance from additional experts, a panel of technical experts can be convened by the HDATF. This panel will serve in an advisory capacity to the HDATF. A list of contacts at various agencies, associations and institutions will be developed and maintained by the ORS to assist the HDATF in convening these panels in a timely manner, on an as needed basis.

The HDATF will determine if the research purposes proposed by data applicants can be reasonably accomplished without disclosure of restricted data elements. If restricted data elements are required, efforts will be made to ensure that the disclosure risks have been minimized and that the remaining risks are outweighed by anticipated health, economic, safety or scientific benefits.

Return to Table of Contents

2. Confidentiality Contract

Applications for the release of restricted data elements require the principal investigator to submit a signed confidentiality contract to the ORS with a list of the names and titles of all persons who will have access to the data including: employees, subcontractors and committee members. All persons with access to the data will be required to sign a confidentiality contract which will be held by the principal investigator for review upon request by the ORS. These confidentiality contracts will include, but not be limited to, the following clauses.

1. I will not allow others to nor will I myself use the data elements for purposes other than the study proposes and the purposes specified in this application. Use of restricted data elements for a research project other than the one described in this application will not be undertaken until a separate application form for that project has been submitted and approved under the procedures established in Final Regulations, State Budget and Control Board, Chapter 19, Statutory Authority: 1976 Code Section 44-6-170, Article 9, "Data Release For Medical Encounter Data & Financial Reports."

2. I will not allow others to nor will I myself release, furnish, disclose, publish or otherwise disseminate these data in any manner other than those approved and specified in this application.

3. I will not allow others to nor will I myself use this data to identify any patient,without prior legal authority.

4. I will not allow others to nor will I myself use this data to identify any health care facility and/or professional without prior DOC approval.

5. I will not allow others to nor will I myself publish, disseminate, communicate or otherwise re-release health care facility and/or professional identifiable data without prior approval by the DOC and review and comment by the affected facilities

6. I will not allow others to nor will I myself match this data set(s) to other patient level data sets by use of patient, health care facility and/or professional level characteristics without prior approval by the DOC.

7. I will not allow others to nor will I myself release data in a report or for dissemination with a cell size of less than 5 without prior approval by the DOC.

8. A full disclosure of how the data are to be used and the safeguards used for the storage of the data are included with this application. (Please submit any changes to the security procedure outlined in the application to the ORS.)

9. Restricted and/or confidential data elements will be destroyed or returned to the ORS upon completion of the research project.

10. The data must remain solely with the original project entity. A new application must be submitted in the event of a proposed change of the lead entity for the project. In the event of a change in the principal investigator, a newly signed Confidentiality Contract must be submitted to the ORS within 90 days.

11. The ORS will be held harmless from damages resulting from the use/misuse of these data.

12. These data are the property of the ORS and must be surrendered upon direction of the DOC.

13. Approval by the DOC for the release of data is not equivalent with endorsement of the project.

Failure to comply with the Confidentiality Contract may result in legal action as specified in Section 44-6-180, as amended, Code of Laws of South Carolina, 1976: "A person violating this section is guilty of a misdemeanor and, upon conviction, must be fined not more than five thousand dollars or imprisoned not more than one year, or both."

Return to Table of Contents

C. Follow-back Studies

Patient contact for follow-back studies, using patient identifiable data, must be conducted through the health care facility and/or professional and requires the informed consent of the patient or the patient's representative. The purpose of the studies shall not be disclosed to anyone, when trying to locate patients, other than the entity originally providing the ORS with the data, the patient or the patient's representative. No undue burden shall be placed upon health care facilities and/or professionals to comply with follow-back studies. For on-going data activities, the data users with assistance from the ORS in conjunction with the South Carolina Health Information Management Association shall develop an informed consent form for use by the appropriate facilities.

Return to Table of Contents

III. Release of Confidential Data

Confidential data will only be released if a mandate has been established by statutory law. Confidential data elements include, but are not limited to, patient name and address (except as otherwise provided herein), any data elements not required by law and patient zip-code (digits 6-9).

Return to Table of Contents

IV. Never Releasable Data

Never releasable data may be used for statistical linking purposes only. Never releasable data elements include, but are not limited to, patient social security number (for all encounters), patient name and address for all Mental Health and Alcohol and other Drug Abuse encounters as required by federal law, and any other patient identifying information protected from release by federal law.

Return to Table of Contents

V. Release of Data to Entities as Required by Law

If an entity obtains statutory authority for the release of restricted and/or confidential data elements, that entity must submit to the ORS:

1. Written statutory evidence indicating entitlement of access to the data, and

2. A copy of or citation of the statute(s) and/or regulation(s) that requires the entity to maintain the confidentiality and security of the data,

   or

3. If statutory and/or regulatory requirements for the maintenance of the confidentiality and security of the data do not exist or do not satisfy the intent of Section 44-6-170, as amended, Code of Laws of South Carolina, 1976, and in Final Regulations, State Budget and Control Board, Chapter 19, Statutory Authority: 1976 Code Section 44-6-170, Article 9, "Data Release For Medical Encounter Data & Financial Reports," all persons (including staff, subcontractors and committees) with access to the data will be required to sign a confidentiality contract supplied by the ORS. These contracts shall be available upon request by the ORS.

Release of confidential data elements for follow-back investigations must be mandated by statutory law. The DOC encourages entities performing follow-back investigations with confidential data to adopt the DOC's policies for follow-back investigations.

The ORS recognizes that DHEC has a public health responsibility based on legal authority that requires the receipt and use of data maintained by the ORS. Therefore, the ORS will provide data for DHEC's surveillance activities and epidemiological investigations, as required.

In order to assist in health planning in South Carolina, through the provision of timely data, data will be released for the inventory of facilities and services, development of methodologies and the evaluation of health care services and costs for the State Health Plan under DHEC's Certificate of Need Process.

State agencies and other organizations that have a mandate established by statutory law to access these data will be provided technical assistance for linking data sets and will be encouraged to use the ORS for data set linkages.

Return to Table of Contents

MANAGEMENT POLICIES FOR DOC AND ORSS.

I. Procedures for Maintaining Confidentiality of the Data

Employees, contractors and agents of the ORS and DOC, as well as members of their committees, task forces and advisory groups, will have occasion to work with restricted and/or confidential data elements on a regular basis. This responsibility will be treated with the highest degree of respect and integrity. The ORS has established a policy to require its employees, contractors and agents, and members of its committees, task forces and advisory groups to maintain the confidential nature of the information they encounter in the course of their duties and to sign an annual confidentiality contract. All DOC members, task forces, subcommittees, and advisory groups will also be required to sign an annual confidentiality contract.

The ORS in compliance with Budget and Control Board policies and state and federal law will develop internal security policies for all health data. These internal security policies will be reviewed by the DOC. Access to restricted, confidential and never releasable data elements will be strictly controlled following extensive security measures.

Return to Table of Contents

II. Procedure For Data Verification And Review

Section 44-6-170, Code of Laws of South Carolina, as amended 1976, provides for the ORS to promulgate regulations concerning the submission of data. These regulations require the ORS to ensure that the data meet specific timeliness, accuracy and completeness criteria. Additionally, the ORS has a very detailed editing and "unduplication" process that it follows in preparing data files. Data supplied to the ORS will not be released until the data supplier has had an opportunity to verify the accuracy of the data and submit revisions and supporting documentation if the data is found to not be accurate.

Return to Table of Contents

III . Fees

It is not the intention of the DOC or ORS to limit access to health care data through the adoption of unreasonable fees. The ORS follows the policy of the State Budget and Control Board to charge for the release of reports and other data based on a cost recovery basis.

Return to Table of Contents

DEFINITIONS

Data Element: refers to any specific characteristic, usually encoded, describing a patient, services provided to a patient or the health care facility and/or professional providing the services, during a medical encounter.

Data Oversight Council: is as defined in Section 44-6-170, as amended, Code of Laws of South Carolina, 1976.

Disclosure: means to communicate, transmit, or in any way to convey any data, referred to in these regulations to any individual organization in any form, either written, verbal or otherwise.

Encounter Level Data: refers to data gathered or organized by each contact between a patient and a health care professional in which care was given.

Follow-back Investigation: refers to a procedure in which a researcher obtains additional data by contacting patients, next-of-kin, informants, physicians, hospitals and/or other individuals or facilities associated with the individual.

Health Care Facility: includes but is not limited to acute care hospitals, psychiatric hospitals, alcohol and substance abuse hospitals, tuberculosis hospitals, nursing homes, kidney disease treatment centers, including freestanding hemodialysis centers, ambulatory surgical facilities, rehabilitation facilities, residential treatment facilities for children and adolescents, habitation centers for mentally retarded persons or persons with related conditions, and any other freestanding facility offering services or special equipment for which Certificate of Need review is required by state law. For the purposes of this document, Home Health Agencies are included as defined by "Licensure of Home Health Agencies Act," as a public, nonprofit or proprietary organization, whether owned or operated by one or more persons or legal entities, which furnishes or offers to furnish home health services.

Health Care Professional: includes but is not limited to physician, physician's assistant, dentist, dental hygienist, dental technician, pharmacist, physical therapist, physical therapists assistant, optometrist, psychologist, respiratory care practitioner, registered nurse, licensed practical nurse, podiatrist, occupational therapist or other health care professional registered or licensed and practicing in South Carolina.

Health Data Analysis Task Force: is as defined in Section 44-6-170, as amended, Code of Laws of South Carolina, 1976.

Identifiable Health Data: means any item, collection, or grouping of health data that makes the individual or entity described in the health data identifiable.

Research: means a planned and systematic sociological, psychological, epidemiological, biomedical, economic or other scientific investigations carried out by a government agency,by a scientific research professional associated with a bona fide scientific research organization, by a graduate student currently enrolled in an advanced academic degree curriculum, or other organizations with bona fide research capabilities with an objective to contribute to scientific knowledge, the solution of social and health problems, or the evaluation of public benefit and service programs. This definition excluded methods of record analysis and data collection that are subjective, do not permit replication, and are not designed to yield reliable and valid results.

Return to Table of Contents