The legislation that established the Louisiana Tumor Registry (R.S. 40:1105.1 et seq.) specifies that any health care facility or provider diagnosing or treating cancer patients shall report each case of cancer to the registry. It also protects health care facilities and providers that disclose confidential data in good faith to the LTR from damages arising from such disclosures.
More detailed instructions for carrying out the law can be found in the LTR’s legislative rules (LAC 48: V.8501-8515). These rules specify that if a facility or provider does not comply with the LTR reporting rules, LTR regional staff or contractors will abstract the cases and may request reimbursement for the actual cost of their work.In addition, health care providers and facilities are to establish remote access to electronic health records.
The legislative rules also document the Registry’s confidentiality policies, specifying that no confidential data shall be permissible in court proceedings of any type, that the LTR shall establish procedures for the release of aggregate and case-specific data, and that all registry employees or other data users will sign confidentiality agreements. In addition, the rules authorize the LTR to exchange data with other states so that it may obtain data about residents of Louisiana who seek care out of state. In return, the Registry may provide data to other states about their residents.
The LTR legislative rules have established the following reporting deadlines:
One month after diagnosis:
All cases, whether pathologically or clinically diagnosed, for children and adolescents aged 0-19 years. Only demographics and minimal details about the diagnosis are required. For more information, click here.
Two months after diagnosis:
Radiation and oncology clinics
Six months after diagnosis or first contact:
Hospitals (complete abstracts)
Non-Compliance with Deadlines
The LTR legislative rules stipulate that “If a facility fails to meet the deadline for reporting in the format specified by the Louisiana Tumor Registry or if the data are of unacceptable quality, personnel from the Louisiana Tumor Registry may enter the facility to screen and abstract the information. In such situations, the facility shall reimburse the Louisiana Tumor Registry or its contractor $45 per case or the actual cost of screening, abstracting, coding, and editing, whichever is greater” (48.V.31.8507.F).
Since April 2003, the Health Insurance Portability and Accountability Act (HIPAA) has required that healthcare providers obtain consent from all patients for the release of their medical records. Because the Louisiana Tumor Registry is required by law to obtain cancer information, however, it is considered a public health authority and is exempt from the patient consent provisions of HIPAA. For more information see the HIPAA FAQs.
CONFIDENTIALITY AND DATA SECURITY
The legislation that established the Louisiana Tumor Registry (R.S. 40:1299.80 et seq.) protects health care facilities and providers that disclose confidential data in good faith to the LTR from damages arising from such disclosures. It also specifies that no confidential data shall be included in court proceedings of any type, that the LTR shall establish procedures for the release of data, and that all registry employees or other data users will sign confidentiality agreements
The HIPAA Privacy Rule recognizes that “certain incidental uses and disclosures [may] occur as a by-product of another permissible or required use or disclosure.” These are not considered a violation of confidentiality as long as the entity has applied reasonable safeguards and implemented the minimum necessary standard. (45 CFR 164.502(a)(1)(iii))
All LTR staff members and contractors are aware of the confidential and sensitive nature of the Registry data with which they work. All have been carefully trained and are required to complete monthly confidentiality and compliance-related modules. All sign confidentiality agreements annually. Paper documents are shredded when no longer needed, computers lock down after idling for 10 minutes, and no LTR data are stored on unencrypted portable devices such as memory sticks or laptops.
LTR data are encrypted from data entry through editing and consolidation procedures and as long as they are stored with the Registry. All encryption modules used to protect registry data have been validated by NIST to meet the currently applicable version of Federal Information Processing Standards (FIPS) 140-2.
What are “reportable” diagnoses?
Who are the patients?
If a patient is a resident of Louisiana and is diagnosed and/or treated in Louisiana or another state or if a patient from another state is diagnosed and/or treated with a reportable disease in Louisiana, their information must be reported to LTR in the proper format.
REMOTE ACCESS TO MEDICAL RECORDS
The Louisiana Tumor Registry legislative rules require health care providers and facilities to allow the Registry online access to medical records if electronic health records have been implemented (LAC 48:V.Chapter 85.8505.A).
Remote access saves time for staff members from both the Registry and the medical institutions by facilitating:
- obtaining enhanced data for special studies