Vital Statistics Data Requests - Frequently Asked Questions
Information Privacy and Security Requirements (IPSR)
Who needs to sign an IPSR?
A signed California Department of Public Health, Center for Health Statistics and Informatics (CHSI), "Information Privacy and Security Requirements" (IPSR) data application is required for each organization or institution where Vital Records data will be stored or accessed. Each application's security safeguards will be assessed on a case-by-case basis.
Example scenarios:
1. Multiple offices on a single campus:
In the case of academic institutions with different campus offices, a single IPSR is sufficient, since different on-campus offices would be covered under the same institutional IT requirements.
2. Home offices:
By signing an IPSR, you acknowledge and agree that your physical office and computer meet the very strict, specified physical and electronic security protocols outlined within the IPSR. While not impossible, it may be highly unlikely that a home office environment can adhere to the specifications outlined in the IPSR. Please review each security requirement, carefully; as the VSAC may require further documentation or explanation.
Does the Co-Principal Investigator need to sign the IPSR?
If the Principal Investigator and Co-Principal Investigator is co-located and accessing the data from the same institution, then a single IPSR, signed by the PI is sufficient.
My institution cannot comply with the requirements of the California Department of Public Health's Information, Security, and Privacy Requirements (IPSR). Can I make changes to the IPSR and submit for CDPH consideration?
Yes, some provisions of the IPSR may be negotiable or may be waived or excepted by CDPH under certain circumstances. Such requests should be submitted to the CDPH Center for Health Statistics and Informatics, Health Information and Research Section (HIRS), which will route the document through CDPH Office of Legal Services (OLS) and the CDPH Information Security Officer (ISO) for review and approval (if warranted). This is accomplished by following the steps below:
- Changes to the IPSR can be proposed by altering the original IPSR word document. Please indicate changes (using the "track changes" Word function) with respect to the proposed modifications to the sections of the IPSR which are problematic for your institution, and provide justification for each change within a comment box.
- Submit the revised IPSR to HIRS, via email: HIRS@cdph.ca.gov
- HIRS staff will serve as the intermediary and route the revised IPSR to either CDPH OLS or the ISO (or both), depending on the relevancy of the requested revisions.
- Please know that initial review of the revised IPSR can be lengthy, and may take three to four months.
- Upon review and determination by CDPH OLS and/or the ISO, HIRS staff will return feedback and determination regarding what changes, if any, were accepted to the IPSR.
- If you disagree with a response or determination, HIRS staff will again serve as the intermediary party between CDPH OLS, the ISO, and your legal department.
Vital Records Data
How is the underlying cause of death coded?
All Vital Records Business Intelligence System (VRBIS) data fields, except the causes of death, are based on registration data and refreshed every 30 minutes. Therefore, for all data use other than cause of death, the data are complete, final, and coded in near real time. The National Center for Health Statistics (NCHS) codes all causes of death according to the International Classification of Diseases, version 10 for Mortality (ICD-10) using the literal text from the death certificate. Once coded, the cause of death codes are provided to the California Department of Public Health (CDPH) by NCHS. CDPH sends registered deaths to NCHS every day (more than 1,000/day, referred to as a batch). Between 70% and 80% of death records can be coded automatically by NCHS and returned to CDPH within a few days of state registration. Anywhere between 20% and 30% of records will have to be manually reviewed before NCHS can assign a cause of death code. These records can take up to several months to be returned to CDPH with a cause of death code. The records that require manual review are sent back to CA once the last record in the batch is processed.
The coded cause of death is based on information provided on the death certificate or on amendments to the certificate. Coroners may indicate "pending" for cause of death until they make a determination. These are coded as "unknown" by NCHS until the coroner provides specific information. The law does not set a required time frame in which coroners must make this determination, and it is not unusual for it to take many months for coroners to finalize the cause of death on the death certificate through the amendment process.
The completeness of cause of death will increase with the interval between registration and data file creation. A monthly file prepared in the month following registration includes all cases registered up to the month of registration and all data fields will have a data value, but that data value may be changed subsequently through the amendment process. A file created three months after the month of registration will be more "final", in that many amendments, including updates to cause of death, will have been applied. A file created six months after registration will be even more "final", in that even more amendments and updates will have occurred.
What is included in the Multiple Causes of Death (MCOD) File versus the MCOD variables in the Death files?
NCHS produces a customized MCOD file for California that includes the entity-axis and record-axis codes for every registered death along with other data fields such as the group cause of death codes, infant group cause of death codes, the positional information for each entity-axis code, and NCHS coded race and ethnicity fields. This file includes the unique certificate number for each record and can therefore be merged with the California Comprehensive Death File (CCDF) or California Comprehensive Master Death File (CCDMF) by data users. This file is generally made available 12-18 months after the close of the calendar year.
Effective 2016, the entity-axis codes and record-axis codes data are available in the CCDF and CCMDF data files; sequence number 201-240. Along with the ICD-10 code for the underlying cause of death, NCHS returns to CDPH the entity-axis codes and record-axis codes for each registered death we submit to them. These multiple cause of death fields are coded by NCHS and returned to CDPH in the same manner described above.
Data Linkage to Vital Records
I would like to link a dataset to Vital Records data. Is this permissible?
If you are proposing to link data to requested Vital Records data, you must list each external data source in both the Vital Statistics Advisory Committee (VSAC) and Committee for Protection of Human Subjects (CPHS) applications.
Can Vital Records data be retained in my dataset?
Vital records data can only be retained for the duration of the approved study time frame, as approved by the State Registrar. After the study expiration date, all Vital Records data must be destroyed or returned to CHSI. If you need additional time to complete your study analysis, a request for study continuation can be submitted to VSAC along with an extension request to CPHS.
Can I re-release data elements obtained from Vital Statistics?
Original data elements provided from CHSI cannot be re-released or disclosed without review by VSAC and approval from the State Registrar.
Vital Statistics and Advisory Committee (VSAC)
What is the Vital Statistics and Advisory Committee?
The Vital Statistics Advisory Committee (VSAC) reviews and provides recommendations to the State Registrar on; (a) adequacy of procedures pertaining to the release of vital statistics and confidentiality of personal health and medical information; (b) whether a legitimate scientific interest is presented and whether the significance of the project justifies use of confidential information; (c) consistency of research conducted using birth and death certificate data with guidelines provided by the CPHS.
Who can serve on VSAC?
The State Registrar is required by law to establish the VSAC and make every effort to ensure its membership is representative of the community. Membership recruitment is continuous and vacancies are filled and appointed by the State Registrar from an available pool of applicants.
When are the VSAC meetings held?
VSAC meets monthly via teleconferencing and the meeting is open to the public, complying with the Bagley-Keene Open Meeting Act. A meeting agenda is posted 10-days prior to the meeting date and is available on the VSAC webpage.
Data Dictionary
Why do I need to justify the variables I am requesting for my study?
California statute dictates that CHSI is only permitted to disclose the "minimum data necessary" in an effort to ensure security and privacy of personal information. Therefore, justifications for requested variables need to specify how the data will be utilized to achieve the goals of the proposed study. Additionally, VSAC needs to assess the requested variables because they are responsible for determining whether the significance of a project justifies the use of confidential information.
What information should be included for a variable justification?
Briefly describe how each of the variables you are requesting will be utilized in your study analysis.
Examples:
"Demographic information will be used to generate descriptive statistics of the cohort."
Mother's Race: "Covariate in analysis of relationship between demographic characteristics and birth outcomes."
Birth Date and Date of Last Menses: "Use to calculate gestational age of child."
Does the CHSI data dictionary need to be submitted as an attachment to CPHS application?
Yes, CPHS must review the CHSI data dictionary. Only the variables requested and approved in the CPHS application will be released from CHSI.
1. California Health and Safety Code 102465
2. California Civil Code Section 1798.24 (C)