General Information on the Use of Restricted Data From the Community Tracking Study Household Survey, 1996-1997, and Followback Survey, 1997-1998

This document contains the instructions and forms needed for researchers interested in obtaining restricted data from the Community Tracking Study (CTS) Household Survey, 1996-1997, and Followback Survey, 1997-1998 conducted by the Center for Studying Health System Change (HSC) for the Robert Wood Johnson Foundation (RWJF). These data are disseminated by the Inter-university Consortium for Political and Social Research (ICPSR), which serves as an agent for RWJF.

About This Application and the CTS

The Community Tracking Study, conducted by the Center for Studying Health System Change, provides data to foster the monitoring and understanding of changes in the health care system and their effects. One important component of the CTS, the Household Survey, gathers information on general health status; limitations in daily activities; smoking behaviors; health insurance coverage; health care use; usual source of health care; out-of-pocket expenses for health care; unmet health care needs; patient trust; satisfaction with physician choice; and last doctor visit. This survey information is available in unrestricted, public use microdata files. These unrestricted files are freely available to researchers who agree not to attempt to identify individual respondents.

Another CTS component, the Followback Survey, was designed to obtain detailed information on private health insurance coverage reported by respondents to the Household Survey. Information on private health insurance policies collected by the Followback Survey includes product type, gatekeeping, consumer cost sharing, provider payment methods, and coverage of mental health and/or substance abuse services. All data from the Followback Survey are restricted from general dissemination and are not available in public use files.

The HSC promised anonymity to survey respondents, a promise they take very seriously. Because respondents provide large amounts of detailed information, it is possible that data in the CTS data files could be used to identify individuals and households. Such a breach of confidentiality would be very costly. It would destroy the trust that respondents placed in the HSC and in the research community as a whole. Individuals would be less willing to participate in future CTS data collection efforts and in similar studies. Moreover, the HSC and ICPSR would face liability for damages that might occur as a result of disclosing personal information.

Because of the damage that could be caused by a breach of confidentiality, HSC and ICPSR have gone to great lengths to prevent this from happening by omitting personal identifiers and adjusting certain responses through aggregation and other data-masking procedures in the public use version of the Household Survey data. As one result of these measures, the public use Household Survey data do not support analyses below the state level or the level of the CTS sites. Since these adjustments will pose a serious limitation to some researchers, a version of the CTS Household Survey data that contains geographic identifiers down to the county level and excludes other recoding for reasons of confidentiality is available as a restricted dataset. This restricted dataset also includes data from the Followback Survey and may be used only under specific contractual conditions.

Before applying for the use of the restricted data file, researchers should ascertain that 1) the public use file will not satisfy their needs, and 2) the restricted data file contains the data needed for their research. To this end, researchers should examine the documentation for the public use and restricted use data for the CTS Household Survey, 1996-1997, and Followback Survey, 1997-1998.

Eligibility

Access to the restricted dataset is limited to researchers who require the additional variables contained in the restricted use file and who agree to the terms and conditions contained in the Community Tracking Study Household Survey, 1996-1997, and Followback Survey, 1997-1998 Restricted Data Use Agreement. Furthermore, access to the restricted use dataset is limited to researchers employed by an organization possessing a current NIH Multiple Project Assurances (MPA) Certification Number or Federal Wide Assurances (FWA) Certification Number (typically research-oriented universities). Access for individuals employed by organizations that do not have an MPA Certification Number or FWA Certification Number may be obtained, however, upon the submission, review, and approval of the Application's Item #9 as well as the documents described in the following section.

University students may gain access to the restricted data, but a faculty advisor must serve as Restricted Data Investigator. The faculty advisor and institution bear full responsibility for ensuring that all conditions of the agreement are met by the student, who must sign the Supplemental Agreement With Research Staff form.

Applying for Use of Restricted Data

Applicants must submit the following items to ICPSR:

Application for Community Tracking Study Household Survey, 1996-1997, and Followback Survey, 1997-1998 Restricted Data
Current CVs of all researchers who will be working on the project. CVs of support staff (e.g., research assistants, programmers) are not required.
A detailed Data Protection Plan (see instructions)
A completed and original signature copy of the Community Tracking Study Household Survey, 1996-1997, and Followback Survey, 1997-1998 Restricted Data Use Agreement for each organization involved in the proposed project.
A completed and original signature copy of the Supplemental Agreement with Research Staff for each member of the research team other than the Restricted Data Investigator who will have access to the data, including Co-Principal Investigators, if any.

The Community Tracking Study Household Survey, 1996-1997, and Followback Survey, 1997-1998 Restricted Data Use Agreement is a legal document between the researcher, her/his employer, and ICPSR. Changes in the employment status of the researcher require the completion of a new Community Tracking Study Household Survey, 1996-1997, and Followback Survey, 1997-1998 Restricted Data Use Agreement.

ICPSR will have full discretion in deciding whether the applicant meets eligibility criteria and whether the Data Protection Plan is adequate. ICPSR may request additional information from applicants or request changes to the Data Protection Plan. If ICPSR decides all requirements are met, a representative from ICPSR will sign the CTS Household Survey, 1996-1997, and Followback Survey, 1997-1998 Restricted Data Use Agreement and return a copy of the fully executed agreement to the applicant along with instructions for obtaining a copy of the data.

If during the course of the research project, new staff are added who will have access to the data, signed copies of the Supplemental Agreement must be sent to ICPSR. Access to the data cannot be provided to these staff members until the Supplemental Agreements are signed by an ICPSR representative and returned to the Restricted Data Investigator.

Research Teams Consisting of Persons Employed at Different Organizations

Because the researcher and her/his employer are both parties to the Community Tracking Study Household Survey, 1996-1997, and Followback Survey, 1997-1998 Restricted Data Use Agreement, multiple Agreements must be executed when members of a research team with access to the restricted data are employed by different organizations. A separate Agreement must be executed with each organization involved in the project. For instance, when researchers employed at different universities collaborate on the research project, a Restricted Data Investigator must be designated at each university and each university must execute its own Agreement. When a researcher contracts with a firm to perform programming services using the restricted data, both the researcher's organization and the firm performing the programming must have separate Agreements. (Self-employed persons with no institutional affiliation may not gain access to the restricted data).

When the project involves multiple organizations, the Data Use Agreements for each organization must be submitted to ICPSR together in a single package. This package should include a cover letter identifying the single Principal Investigator who will serve as primary contact for the entire research team. This primary contact must serve as the Restricted Data Investigator (i.e., signatory to the agreement) in his or her employer's Agreement. Other organizations involved in the project should designate the most senior team member (i.e., the team member that holds the greatest authority over other team members from that organization) as their organization's Restricted Data Investigator.

Where to Submit Applications

All application materials described in the previous section, "Applying for Use of Restricted Data," should be mailed to:

Peter Granda
Health and Medical Care Archive
ICPSR
P.O. Box 1248
Ann Arbor, MI 48106-1248

Mailing options which require a street address should be sent to:

Peter Granda
Health and Medical Care Archive
ICPSR
330 Packard
Room 2132
Ann Arbor, MI 48104

Questions about this application for the use of restricted data may also be sent to the above address or forwarded via facsimile (734) 647-8700 or email (hmca@icpsr.umich.edu).

Application for CTS Restricted Data - Data Protection Plan Instructions
Restricted Data Use Agreement - Supplemental Agreement