Use_Constraints:
Before the release of any data, all research proposals requesting the use of confidential death records data must be reviewed by Oregon Health Services for compliance with the following criteria:
1) Data used for statistical reporting and analysis only
2) Care was used in reporting small numbers of events that may inadvertently lead to the identification of individuals. Users should abide by the small numbers guidelines that are attached.
3) No use can be made of the identity of any person, if identity is discovered inadvertently, the Health Statistic Coordinator must be contacted immediately, especially if accident release occurred.
4) Do not link data with individually identifiable data from any other source.
5) Do not release data from the birth certificate to any third party without prior written approval of the Department of Human Services, State Registrar.
6) Take reasonable precautions to protect data from third party exposure. (e.g., use a password protected screensaver when possible, exit data viewing software before you leave your work station, etc.)
SUMMARY OF RELATED LAWS
MORBIDITY & MORTALITY STUDIES - ORS 432.060
“All records of interviews, reports, studies and statement procured by or furnished to the Department of Human Services, any federal health agency or any non-profit health agency that is exempt from taxation under the laws of this state or in connection with special morbidity and mortality studies, are confidential in so far as the identity of an individual patient is concerned. Such records may be used solely for the purpose of the studies.”
VITAL RECORDS - ORS 432.121 (1-12)
All vital records, reports and documents and the data from those documents are confidential and shall not be opened to or for public inspection except in certain circumstances which are specified in the law and rules of the Department; i.e., birth records are available upon written application to only certain persons; marriage and divorce records have restricted access; death records are available to persons having a direct and proper interest.
PROCEDURES FOR USING SMALL NUMBERS
BIRTH and DEATH DATA
Because researcher will have access to potentially identifiable individual record information that is confidential, protected by law and DHS Center for Health Statistics rules and policies, data users must agree to assess the impact on privacy and confidentiality before releasing aggregated data. Identifiable information includes but is not limited to demographic identifier information, which will identify or may reasonably lead to the identification of one or more specific individuals. Therefore, data users should abide by the same rules of confidentiality in reporting non-identified aggregates at the geographic level, where disclosure of detailed demographic information and medical information would make it possible to identify the person in local communities.
Users should abide by the “10 and 50" rule mentioned in Policy 01-01-27 issued on January 1, 1999 by Oregon Department of Human Services, Health Division.
In general, release of a health statistic should only occur if the denominator of the health statistic is more than fifty when the denominator is a population (a group of people with certain age, race, and sex characteristics who live in a particular place) or more than ten when the denominator is a cohort (a group of people whose membership is defined by the occurrence of some event) and the numerator is more than 10 (i.e. pregnacies to women age 10-14 in Clackamas county).
The following guidelines for releasing birth or death data have been authorized by Center for Health Statistics.
Confidentiality Guideline 1: When releasing the total number of births or deaths at the county and sub-county level for any time period, the Ten and Fifty recommendations do not need to be followed. Sub-county level data are by city, zip-code, or census tract.
Confidentiality Guideline 2: When releasing birth or death data for demographic data items at the county or sub-county level for any time period, the Ten and Fifty recommendations do not need to be followed. Sub-county level data are by city, zip-code, or census tract.
Confidentiality Guideline 3: When releasing birth or death data for non-demographic data items at the county or sub-county level aggregated over three or more years, the Ten and Fifty recommendations do not have to be followed. Sub-county level data are by city, zip-code, or census tract.
Confidentiality Guideline 4: When releasing birth or death data for non-demographic data items at the county and sub-county level for a single year or for a two-year aggregation, the Ten and Fifty recommendations should be followed. In cases where population denominator data are not available at the sub-county level, the non-demographic data item should not be released for a single year or for a two-year aggregation. Sub-county level data are by city, zip code, or census tract.
Reliability: The policy recommendation for publishing rates or percentages based on small numbers that applies to vital statistics data is:
Rates and percentages from complete count data and registry data may be published without program review when there are five (5) or more events in the numerator. Unless precluded by confidentiality polices or other program-specific concerns, the small numbers themselves may be published, especially when they represent a sentinel event.
The Center for Health Statistics adopted the following data reliability guideline for releasing birth or death, pregnancy data to the general public, persons who have not signed a CHS confidentiality agreement, or persons who are not local health department employees. The reliability guideline should be implemented after the data have been reviewed for confidentiality following CG1 through CG4. This guideline applies to releasing data in all formats (i.e.: hard copy, electronic).
Reliability Guideline 1: When releasing rates or percentages calculated from birth or death data, the rate or percentage can be released if the number of events is less than five. It is recommended that the number of events from which the rate or percentage was calculated be released with the rate or percentage along with the following footnote “Rates or percentages calculated with less than five events may be unreliable”.