Studies of Welfare Populations: Data Collection and Research Issues. Access to Confidential Data in Practice: Interviews with Researchers Conducting Welfare Leavers Studies

06/01/2002

The legal basis for the use of social program administrative data by nongovernmental researchers is ambiguous. Consequently, governmental agencies that are inclined to provide data to researchers usually can find a legal way to do so through a broad interpretation of the statutory "routine use" or "program purposes" clauses, while agencies that are inclined to block researcher uses can also do so by interpreting these clauses narrowly. From the research perspective, the best solution to this problem would be that privacy and confidentiality legislation take into account the significantly fewer risks posed by research uses of data and develop clearcut regulatory mechanisms tailored to the needs of researchers. We discuss this possibility later (Guiding Principle 12), but it is worth knowing that in the absence of a favorable regulatory environment, many researchers and program administrators have found ways to undertake research with administrative data. Because it may be difficult to get better legislation, the methods used by these program administrators and researchers deserve careful consideration.

To identify these methods, we interviewed researchers and state administrators working in federally funded welfare leavers projects. Because of the complexity of the lives of individuals leaving welfare, these studies require diverse types of data, including multiple sources of confidential administrative data. In this section, we discuss information from 14 welfare leavers studies.(15) These include projects that received fiscal year 1998 ASPE grants to study the outcomes of individuals and families who left the TANF program, and Texas.(16) (We refer to this group of projects as "Welfare Leavers Studies".)

This research began by reviewing the findings from the inventory of research uses of social services administrative data in 26 states that UC DATA completed in 1999. A series of questions then was developed as the basis for telephone interviews with the state officials and researchers conducting ASPE-funded Welfare Leavers Studies. Officials and researchers working on these studies were queried about their experiences with confidentiality and data access. More than 20 individuals in the 14 locations listed in Box 8-1 were interviewed in winter 1999/2000.

 

BOX 8-1
Welfare Leavers Studies:  States/Localities Interviewed

  • Arizona
  • California (San Francisco Bay Area Counties; Los Angeles County)
  • Florida
  • Georgia
  • Illinois
  • Missouri
  • New York
  • Ohio (Cuyahoga County)
  • Massachusetts
  • South Carolina
  • Texas
  • Washington State
  • Washington, D.C.
  • Wisconsin

In the course of our interviews with Welfare Leavers Studies representatives, we identified 12 guiding principles or practices we believe to be at the heart of successfully overcoming issues of data confidentiality and privacy. We found repeated examples of these principles or practices being put into action across the country in varying ways. They are listed in Box 8-2. The principles, the keys to data collaboration, fell naturally into four categories that are discussed in more detail later: the characteristics of the requesting organization, the characteristics of the organization providing the data, the characteristics of the requesting organization, the "contract" process itself, and the legal framework.

 

 

BOX 8-2
Twelve Guiding Principles of Data Access and confidentiality

The Characteristics of the Organization With the Data

1. Strong Political or Administrative Leadership
2. Designation of a "Data Steward" in the Department and structuring staffing levels and responsibilities to cover data access requests
3. Develop a written confidentiality and security procedure--keep a catalog of written documents: contracts, memorandums of understanding (MOU's), personal security agreements
4. The Agency architecture encompasses all "providing" agencies as in "Super Agencies"
5. A Central Clearinghouse Negotiates or Assists in Legal and/or Technical Issues
6. Plan for Data Access in the Development of Information Systems

The Characteristics of the Requesting Organization

7. The Reputation and Integrity of the Requesting Organization Engenders Trust
8. Trust Between Organizations, a History of Working Together, and Strong Personal Relationships.
9. Develop a Confidentiality/Security Procedure and Keep a Catalog of Exemplary Written Contracts, MOUs, and Personal Security Agreements.

The "Contract" Process

10. Put in Writing Mechanisms for Monitoring Confidentiality and Security and for Sanctioning Breaches
11. Congruence of Research Agency Goals: Demonstrated Benefits to Participating Organizations

The Legal or Statutory Authority

12. Statutory Language Authorizes or Is Broadly Interpretable to Authorize Data Access for Researchers

The specific principles range from the obvious--"Put Procedures and Contracts in Writing"--to the sublime--Find Strong Leadership." We discuss each of the principles in detail and give illustrative examples of these principles. See Table 8-2 for a complete listing of examples of the principles in the Welfare Leavers Study sites.

 

TABLE 8-2
Twelve Guiding Principles of Data Access and Confidentiality
Examples from Interviews with Welfare Leavers Study Researchers (Fall 1999)

The Characteristics of Donor Organization

Examples
1. Strong Leadership
  • California: California Department of Social Services (CDSS), Employment Development Department (EDD)
  • Illinois
  • Missouri: Governor Mel Carnahan, Missouri Training & Employment Commission
  • New York: Federal Department of Labor
  • Texas: Federal Department of Labor
2. Staff Levels or Responsibilities
  • California: Labor Market Information Division
  • Illinois: Bureau of Program Design & Evaluation
  • Missouri: "Administrative Data Guardian"
  • Washington State: Office of Planning & Research
  • Wisconsin: Data Stewardship
3. Written Confidentiality/Security Procedure
  • California
  • Illinois: Dept. of Human Services
  • Wisconsin: Data Stewardship
4. Agency Architecture
  • Arizona: Arizona Department of Economic Security (ADES)
  • Illinois: Dept. of Human Services
5. Central Clearinghouse
  • Arizona: ADES Data Mart
  • Florida: Florida Education & Training Program Placement Information Program
  • Illinois: Chapin Hall, University of Chicago
  • South Carolina: Budget & Contracts Board
  • Texas: State Occupational Information Coordinating Committee
  • Washington State: Internal Review Board
6. Plan for Data Sharing in Development of Information Systems
  • California: Family Health Outcomes Project

The Characteristics of Requesting Organization

7. Reputation and/or Integrity
  • California: RAND
  • Illinois: Chapin Hall, University of Illinois
  • Massachusetts: Center for Survey Research at University of Massachusetts-Boston
  • Ohio: Manpower Demonstration Research Program (MDRC)
8. History of Working Together, Personal Relationships
  • California: UC DATA & CDSS
  • Georgia: Georgia State University & Department of Children and Family Services (DFCS)
  • Illinois: Chapin Hall at University of Chicago, Illinois & Department of Children and Family Services, Department of Employment Security & Illinois Department of Human Services
  • Missouri: University of Missouri & state agencies
  • New York: Office of Transitional and Disability Assistance (OTDA) and Department of Labor (DOL)
  • Ohio: Case Western University (CWRU) and Bureau of Employment Services (BES), CWRU and DSS, and CWRU and MDRC
  • Washington, DC: Urban Institute & Department of Human Services
9. Written Confidentiality/Security Procedure
  • California: UC DATA, RAND
  • Ohio: CWRU

The "Contract" Process

10. Put in Place Mechanisms for Monitoring Confidentiality and Security and/or Sanctioning Breaches. Contracts In Writing
  • California
  • Georgia
  • Illinois
  • Missouri
  • New York
  • Ohio
  • South Carolina
  • Washington State
  • Washington, DC
  • Wisconsin
11. Congruence of Research to Agency Goals-Demonstrated Benefits to Participating Organizations
  • Arizona
  • California CalWORKs
  • California Leavers Studies
  • Florida
  • Georgia
  • Illinois
  • Massachusetts
  • Missouri
  • New York
  • Ohio
  • South Carolina
  • Washington State
  • Washington, DC
  • Wisconsin

The Legal or Statutory Authority

12. Statutory Language Authorizes or Is Broadly Interpreted to Authorize Data Access
  • California
  • Georgia
  • Illinois
  • Missouri
  • New York
  • Ohio
  • South Carolina
  • Washington State

 

NOTES:

ADES Arizona Department of Economic Security
AFDC Aid to Families with Dependent Children
ASPE Assistant Secretary for Planning and Evaluation (of the U.S. Department of Health and Human Services
BES Bureau of Employment Services
CDSS California Department of Social Services
CWRU Case Western Reserve University
DCFS Department of Children and Family Services
DFACS Department of Family and Children's Services
DOL Department of Labor
DSHS Department of Social and Human Services
DTF Department of Taxation and Finance
EDD Employment Development Department
FETPIP Florida Education and Training Placement Information Program
GSU Georgia State University
IDB Integrated Database
JTPA Job Training Partnership Act
LMID Labor Market Information Division
MDRC Manpower Demonstration Research Corporation
MEDS Medi-Cal Eligibility Data System
MOU Memorandum of Understanding
MTEC Missouri Training and Employment Council
OCSE Office of Child Support Enforcement
OTDA Office of Transitional and Disability Assistance
SOICC State Occupational Information Coordinating Committee
TANF Temporary Assistance for Needy Families
UI Unemployment Insurance

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