Privacy and Confidentiality Protocol

Attachment 6a. BRFSS Privacy and Confidentiality Protections

Behavioral Risk Factor Surveillance System (BRFSS)

(OMB Control No. 0920-1061, expiration date 03/31/2022)

A.10. Protection of the Privacy and Confidentiality of Information Provided by Respondents

Overview of the Data Collection System

Random digit dialing (RDD) telephone samples will be delivered to the states on a monthly or quarterly schedule. Information collection will be implemented by state health departments or their designees. States will administer the core/rotating/emerging core questions without change. States will determine which of the optional modules will be included in their jurisdictions and whether the state will split the sample to allow for the inclusion of a large number of optional modules. Field operations are managed by state health departments and/or their contractors following The Data Collectors’ Protocol provided by the BRFSS (see Attachment 10). States submit data to CDC for final cleaning, weighting, the production of analysis datasets, and other technical assistance as needed. Computer-assisted telephone interviewing (CATI) programming is provided by the CDC to states to convert the BRFSS questionnaire into a CATI interface from which interviewers will read and record answers to each question. States may opt to use their own CATI programming software. States run edit checking programs against the data and submit to the CDC on a monthly/quarterly basis. CDC then conducts additional data quality processes and summarizes the data in YTD reports provided to the states. At the end of each calendar year, data are finalized and weighted.

The datasets provided to the states at the end of the year include a large number of variables on calling attempts, final calling outcomes, questionnaire item responses and calculated variables. A subset of the data set provided to the states is published on the BRFSS website for public use.

Items of Information to be Collected

The BRFSS core questionnaire (see Attachment 3a for even-number year core questionnaire and Attachment 3b for odd-numbered year core questionnaire) includes information on health status, health risk and risk preventive behaviors, as well as basic demographic information. Optional modules which are selected by individual states, based on their information needs, must also be implemented as written without changes in wording. Optional modules cover a range of health topics (see Attachment 4). Other than phone numbers, which are part of the original sample files sent to the states, no information in individually identifiable form (IIF) will be collected from respondents during the telephone interviews. On occasions when states make appointments to call selected respondents back after portions of the survey have been completed, first names may be given to ensure that the remainder of the interview is conducted with the same individual. The BRFSS uses the HHS Safe Harbor guidelines (https://www.hhs.gov/hipaa/for-professionals/privacy/special-topics/de-identification/index.html) to determine suppression of variables from public use information. Researchers who request access to information not provided in the public use dataset may use the Research Data Cebter (RDC) hosting agreement with the BRFSS. States must develop and maintain procedures to ensure respondents’ privacy, assure and document the quality of the interviewing process, and supervise and monitor trained interviewers. The CDC provides states with guidelines for training interviewers and standard procedures for monitoring a minimum of 10% of all interviews. The Data Collectors’ Protocol (Attachment 10) provides instruction to states about data storage and confidentiality of responses as well as data quality.

How Information Will Be Shared and For What Purpose

Since state health departments and/or their designees are the data collectors for the BRFSS, information will originate with the states. States may determine whether and how their data will be released to third parties. The CDC maintains an upload website by which data are submitted monthly/quarterly. CDC does not transmit data from one state to any other, with the exception of cell phone interviews of persons who have an area code from one state, but who actually live in another state. Telephone numbers are not linked to respondents. Files containing RDD telephone samples are kept separately from files which include responses to questionnaire items. CDC receives only de-identified records. Sample files contain sequence numbers which are provided by the sampling vendor and used by data collectors (the states or their designees) to determine calling outcomes for each phone number. The CDC does not receive full phone numbers in the sample file. Sample files received by the CDC and states which have contracted data collection include only area code and prefixes of phone numbers which are associated with sequence numbers. States which have internal data collection systems and contracted data collectors have sole access to both sequence numbers and full phone numbers during the data collection process. States keep responses to the BRFSS questionnaire separately from sample files. After data collection, sequence numbers are recoded to prevent subsequent links of sample files and responses to questions by any person or organization involved in data collection. State level data sets are owned by individual states. A subset of state data sets is provided for public use. Public use data sets have been stripped of a number of variables which provide locational information on the respondents including zip codes, and county identifiers for counties with adult populations of less than 10,000, occupational information, uncategorized ages of respondents, and detailed race. CDC may provide data with locational information for internal users to produce small area estimates of health indicators.

Impact of the Proposed Collection on Respondents’ Privacy

BRFSS sample files include phone numbers, and some addresses. Addresses are only available for telephone numbers in the landline sample where the sample contractor has been able to match phone numbers and addresses. These addresses are used by some states to send advance letters to households in the sample. If a state does not send advance letters, addresses are not included in the sample files. Approximately 40 states use advance letters, with about 40% of the landline sample and about 30% of the cell phone sample matching accurately to an address.

Since sample files are separate from datasets, no phone numbers or addresses are included in the datasets. No dates of birth, last names, or email address are obtained. Information that details race/ethnicity, occupation and small geographic residence (such as county or zip code) is suppressed in the public use dataset. In order to determine which variables to suppress, the BRFSS uses the HHS Safe Harbor guidelines (https://www.hhs.gov/hipaa/for-professionals/privacy/special-topics/de-identification/index.html).

How Individuals Are Informed That Providing Information Is Voluntary or Mandatory

Individuals participating in the BRFSS are informed that they do not have to participate and that they may refuse to answer any question.

Opportunities to Consent

Verbal consent is obtained during the initial contact and screening process (see Attachment 8). The introductory script, including the voluntary nature of the survey, precedes the survey questions.

How Information Will Be Secured

Access to state data sets will be limited to the states themselves and CDC contractors and staff who conduct weighting and data cleaning procedures. Security measures include: 1) Physical controls: CDC facilities are secure, ID accessed buildings. Data will not be stored in hard copy formats; and 2) Technical controls: All electronic data are stored on secured servers protected with firewalls and passwords. All employees are trained on data security measures by taking appropriate HHS courses online. All data collection and records management practices and systems adhere to HHS and CDC IT policies and procedures.

Privacy Act Determination

The Privacy Act does not apply. The BRFSS data will be collected using list-assisted random digit dialing (RDD) landline and cellular telephone samples. No IIF will be collected, filed or retrieved by the name of the individual or other unique respondent identifier such as social security number.

Annual Field Test

The information collection procedures and privacy safeguards for the annual field test are modeled on procedures and privacy safeguards for the main BRFSS survey. Any departures from standard procedures will be identified in the annual field test IC request.