This document contains the instructions and forms needed for researchers interested in obtaining restricted data from the Community Tracking Study (CTS) Household Survey, 2003 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.
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 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, which are freely available to researchers who agree not to attempt to identify individual respondents.
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 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, 2003.
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, 2003 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.
Applicants must submit the following items to ICPSR:
The Community Tracking Study Household Survey, 2003 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, 2003 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, 2003 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.
Because the researcher and her/his employer are both parties to the Community Tracking Study Household Survey, 2003 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.
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).
1. Applicant information: (Note: Unless otherwise instructed, the first Principal Investigator listed will serve as the primary contact person with ICPSR.)
Name of Principal Investigator:
Title:
Department (if applicable):
Organization:
Street Address:
City, State, ZIP:
Phone:
Fax:
Email:
Name of Co-Principal Investigator (if applicable):
Title:
Department (if applicable):
Organization:
Street Address:
City, State, Zip:
Phone:
Fax:
Email:
Please provide information on additional Co-Principal Investigators, if
applicable.
2. Title of research project for which the CTS Household Survey,
2003 restricted data file is requested.
3. Short description of research project including research questions,
primary methodology, categories of variables to be used (attach
additional sheets if required).
4. What types of data from other sources will be merged with the CTS
Household Survey, 2003 restricted data file?
5. State reasons why the CTS Household Survey, 2003 public use data
file is not adequate for conduct of the research project.
6. Describe all the ways that you intend to use the results of the
research, including plans for public dissemination.
7. Provide names, titles, and affiliations of other members of the
research team who will have access to the restricted data or to output
derived from these data. If not all members have been selected, please
list as "unassigned" and indicate the job titles. Include individuals
who are employed by different organizations.
8. If employed at an organization that has a current NIH Multiple
Project Assurances (MPA) Certification Number or Federal Wide Assurances
(FWA) Certification Number, please provide the number
and expiration date.
9. If a member of the proposed research team, including subcontractors, is employed at an organization that does not have an NIH Multiple Project Assurances (MPA) Certification Number or Federal Wide Assurances (FWA) Certification Number, please respond to the following questions:
a. Please describe your employer in detail. Include the type of
organization, profit/non-profit status, and primary sources of
revenue.
b. What is(are) the sources(s) of funding for the specific research for
which you are applying to use the CTS Household Survey, 2003
restricted data file? (List name of funding
organization, whether funds provided as a grant, contract, or other
mechanism.)
c. Please describe proprietary interests of the funding organizations
listed in the response to 9b, above, even if not directly related to the
research project described above.
d. Does your employer have policies regarding scientific integrity and
misconduct, or human subjects research that cover the secondary analysis
of survey data? If so, please describe these policies.
Purpose of the Data Protection Plan: The Data Protection Plan becomes part of the signed agreement between ICPSR and the Restricted Data Investigator(s). If the agreement is executed, all members of the research team with access to the data are contractually obligated to follow all aspects of the Data Protection Plan. The fundamental goal of the protections outlined in this plan is to prevent persons who are not signatories to the Community Tracking Study Household Survey, 2003 Restricted Data Use Agreement or the Supplemental Agreement With Research Staff from gaining access to the data. The agreement will not be executed if the plan is not written with sufficient specificity, or if data protections are not deemed adequate by ICPSR.
What should be covered by the plan: The Data Protection Plan applies to both the raw data file received from ICPSR as well as any copies made by the research team, and any new data derived solely or in part from the raw data file. The plan also should address how computer output derived from the data will be kept secure. This applies to all computer output, not only direct data listings of the file.
Components of the plan: Your Data Protection Plan should contain the following components:
1. Make reference to Title of Research Project and Principal Investigators.
2. List and describe all locations where copies of the data will be kept.
3. Describe the computing environment in which the data will be used:
4. List and describe device(s) on which data will be stored: (on network server, on mainframe computer storage device, on PC hard drive, on removable storage device such as CD, floppy drive, or Zip® drive.)
5. Methods of data storage when data are not being used.
6. Methods of transmitting the data between research team members (if applicable).
7. Methods of storage of computer output (in electronic form as well as on paper).
Types of protection expected: Although there are alternative ways to assure security for the data and applicants should prepare their plans in a manner that best meets their needs, some or all of the following features are typically found in successful data protection plans:
The Restricted Data Investigator and the Receiving Organization agree to the following terms and conditions:
1. "Restricted Data" refers to the original Community Tracking Study Household Survey, 2003 restricted data provided by ICPSR and any fields or variables derived from these data, on whatever media they shall exist. (Aggregated statistical summaries of data and analyses, such as tables and regression statistics, are not considered "derived" for the purposes of this agreement.)
2. "Restricted Data Investigator" refers to the investigator who serves as the primary point of contact for all communications involving this agreement. The Restricted Data Investigator assumes all responsibility for compliance with all terms of this agreement by employees of the receiving organization.
3. "Principal Investigator(s)" refers to the Restricted Data Investigator and any Co-Principal Investigators.
4. "Receiving Organization" refers to the organization employing the Restricted Data Investigator.
5. "Research Staff" refers to any individuals other than the "Restricted Data Investigator(s)" with access to the restricted data.
6. The "Representative of the Receiving Organization" refers to an individual who has the authority to represent your organization in agreements of this sort, such as a Vice President, Dean, Provost, Center Director, or similar official. (Note that a Department Chair is not acceptable unless specific written delegation of authority exists.)
7. "ICPSR" refers to the Inter-university Consortium for Political and Social Research.
8. "HSC" refers to the Center for Studying Health System Change.
9. "RWJF" refers to the Robert Wood Johnson Foundation.
10. The Application for Community Tracking Study Household Survey, 2003 Restricted Data, as approved by ICPSR, is incorporated by reference into this Agreement.
11. The Supplemental Agreement with Research Staff, as approved by ICPSR, is incorporated by reference into this Agreement.
12. The Data Protection Plan, developed by the Restricted Data Investigator, is incorporated by reference into this Agreement.
13. Ownership of CTS Household Survey, 2003 restricted data will be retained by the RWJF. Permission to use CTS restricted data by the Investigator(s) and Receiving Organization may be revoked by the RWJF or ICPSR at any time, at their discretion. The Investigator(s) and Receiving Organization must return or destroy all originals and copies of CTS restricted data, on whatever media it may exist, within 5 days of written request to do so.
14. Access to the CTS restricted data will be limited solely to the individuals signing this agreement and the Supplemental Agreement With Research Staff, as detailed in the approved Data Protection Plan. The data may not be "loaned" or otherwise conveyed to anyone other than the signatories to this agreement.
15. Copies of the CTS restricted data or any subsequent variables or data files derived from the CTS restricted data will not be provided to any other individual or organization without the prior written consent of the ICPSR.
16. The CTS restricted data will be used solely for the purpose of scientific and public policy research, and not for any administrative, proprietary, or law enforcement purposes.
17. The CTS restricted data will be used to generate only statistical summary information that does not allow any individual, family, household, business or organization to be identified. Special care must be taken to avoid publication of tables and analytical results that might permit the identification of individual health insurance plans, entities or products. In particular, tabulations of persons or families by plan characteristics for identified or easily identified sites or counties must not be released.
18. The CTS restricted data will be used solely for the research project described in the Application for Community Tracking Study Household Survey, 2003 Restricted Data incorporated by reference into this document.
19. No attempt will be made to identify any individual person, family, household, business, or organization. If an individual person, family, household, business or organization is inadvertently identified, or if a technique for doing so is discovered, the identification or discovery will be immediately reported to ICPSR, and the identification or discovery will not be revealed to any other person who is not a signatory to this agreement.
20. No attempt will be made to link the CTS restricted data with any other dataset, including other datasets provided by ICPSR, unless specifically identified in the approved Application for Community Tracking Study Household Survey, 2003 Restricted Data.
21. Use of the CTS restricted data will be consistent with the receiving organization's policies regarding scientific integrity and human subjects research.
22. If the Receiving Organization requires a review of research proposals using secondary survey data by an Institutional Review Board/Human Subjects Review Committee or equivalent body, that review has taken place and all approvals have been granted prior to application for use of CTS Household Survey, 2003 restricted data.
23. The Receiving Organization will treat allegations, by ICPSR or other parties, of violations of this agreement as allegations of violations of its policies and procedures on scientific integrity and misconduct. If the allegations are confirmed, the Receiving Organization will treat the violations as it would violations of the explicit terms of its policies on scientific integrity and misconduct.
24. The Restricted Data Investigator certifies that all aspects of the Data Protection Plan, as approved by ICPSR, will be followed until which time all copies of the restricted data are destroyed.
25. The Restricted Data Investigator will certify to ICPSR that all originals and copies of the CTS restricted data, on whatever media, will be destroyed at the completion of the research project described in the Application for Community Tracking Study Household Survey, 2003 Restricted Use Data or within 5 days of written request from the ICPSR.
26. This Agreement will go into effect upon approval of the Agreement by ICPSR, and will remain in effect until the completion of the research project, as noted in the Application for Community Tracking Study Household Survey, 2003 Restricted Use Data, or 24 months from the date this Agreement is accepted by ICPSR, whichever comes first. If, at the end of 24 months, access to CTS Household Survey, 2003 restricted data is still desired, the Restricted Data Investigator must contact ICPSR in writing requesting such continued access. If continued access is denied by ICPSR, or if the Restricted Data Investigator neglects to contact the ICPSR prior to the end of the 24-month period, all originals and copies of the CTS restricted data, on whatever media they exist, must be destroyed by the Restricted Data Investigator.
27. If changes in research plans or computer environment will alter the information originally submitted as part of this Agreement, the Restricted Data Investigator shall provide the ICPSR with a copy of the revised materials and a memorandum describing the changes in advance of the revisions. These revisions will be considered amendments to this agreement and may not be implemented until written approval is received by ICPSR.
27a. If a new version of the restricted data for the Community Tracking Study Household Survey, 2003 becomes available from ICPSR, the Restricted Data Investigator may request the new version by submitting a memorandum to ICPSR. Upon written approval by ICPSR, the memorandum shall be considered an amendment to this agreement.
28. A change in the employer of the Restricted Data Investigator requires the execution of a new Community Tracking Study Household Survey, 2003 Restricted Data Use Agreement and preparation of a new Data Protection Plan. These materials must be approved by ICPSR before restricted data may be accessed at the new place of employment.
29. When other research staff join the project, they shall submit the Supplemental Agreement with Research Staff. Such supplemental agreements shall be submitted in a timely manner but, in any event, prior to granting other research staff access to the data on whatever media in which the data may exist.
30. If ICPSR, HSC or RWJF determines that the Agreement may have been violated, ICPSR will inform the Restricted Data Investigator(s) of the allegations in writing and will provide them with an opportunity to respond in writing within 10 days. ICPSR may also, at that time, require immediate return or destruction of all copies of the CTS restricted data in possession of the investigators. Failure to do so will be determined to be a material breach of this agreement and, among other legal remedies, may be subject to injunctive relief by a court of competent jurisdiction. If ICPSR deems the allegations unfounded or incorrect, the data may be returned to the Restricted Data Investigator under the terms of the original agreement. If ICPSR deems the allegations in any part to be correct, ICPSR, HSC, or RWJF will determine and apply the appropriate sanction(s).
31. If ICPSR, HSC, or RWJF determines that any aspect of this agreement has been violated, ICPSR may invoke these sanctions as it deems appropriate:
I certify that all materials submitted with this application for the CTS Household Survey, 2003 restricted data are truthful.
Furthermore, I acknowledge that I am legally bound by covenants and terms of this agreement, and that violation will constitute unethical professional practice and may subject me to the sanctions listed above.
| Restricted Data Investigator |
|---|
Signature |
Date |
Typed Name |
Title |
Institution |
Building/Room Number |
Street Address |
City/State/ZIP |
Telephone |
Fax |
| Representative of the Receiving Organization |
|---|
By signing this agreement, this organization agrees that access to these confidential data will be restricted to authorized persons whose names appear on this agreement and the Supplemental Agreement with Research Staff, and that this organization is legally bound by the covenants and terms of this agreement. |
Signature |
Date |
Typed Name |
Title |
Institution |
Building/Room Number |
Street Address |
City/State/ZIP |
Telephone |
Fax |
| Representative of the Inter-university Consortium for Political and Social Research |
|---|
Signature |
Date |
Typed Name |
Title |
(Signatory delegated by Chair of ICPSR Council) |
ICPSR |
The undersigned staff, in consideration of their use of restricted data from the Community Tracking Study Household Survey, 2003 certify the following:
1. That they have read the associated Community Tracking Study Household Survey, 2003 Restricted Data Use Agreement, and the Data Protection Plan incorporated by reference into this Agreement.
2. That they are "Research Staff" within the meaning of the Agreement (any research staff other than the Restricted Data Investigator).
3. That they will fully comply with the terms of the Agreement, including the Data Protection Plan incorporated by reference into it.
4. That they will not attempt to access Community Tracking Study Household Survey, 2003 restricted data until approved to do so by the ICPSR.
Signature |
Signature |
Date |
Date |
Typed Name |
Typed Name |
Title/Formal Affiliation with Research Project |
Title/Formal Affiliation with Research Project |
|
|
Signature |
Signature |
Date |
Date |
Typed Name |
Typed Name |
Title/Formal Affiliation with Research Project |
Title/Formal Affiliation with Research Project |
|
|
The above Research Staff are hereby granted approval to access Community Tracking Study Household Survey, 2003 restricted data:
____________________________________________________________
Inter-university Consortium for Political and Social Research
________
Date