Appendix A. Informed consent form

Appendix A: Informed consent form

OMB No.: XXXX-XXXX

Expiration Date: XX/XX/20XX

Next Generation of Enhanced Employment Strategies Project

Voluntary Consent to Participate in a Study

[PROGRAM NAME] IS PART OF A NATIONAL STUDY

[PROGRAM NAME]¹ is participating in the Next Generation of Enhanced Employment Strategies Project, a national study funded by the U.S. Department of Health and Human Services’ Administration for Children and Families [FOR SITES FUNDED BY SSA: and the Social Security Administration]. The U.S. Department of Health and Human Services has asked researchers at an organization called Mathematica to conduct the study. Researchers from other organizations may be added in the future.

You are invited to participate in this important study. Your participation in the study could help improve services offered in the future to other people like you. Participation in the study is voluntary—the decision is yours. If you decide not to participate, you cannot access services from [PROGRAM] until [END OF EMBARGO PERIOD]. This form describes the next steps if you agree to participate in the study.

WHAT INFORMATION WILL BE COLLECTED ABOUT YOU TODAY?

• [PROGRAM STAFF] will ask you some questions about yourself such as your name, date of birth, Social Security number, employment history, and receipt of benefits. The questions will take about 25 minutes to answer.

THE STUDY INCLUDES [NUMBER] GROUPS

• A computer will assign you to one of [NUMBER] groups. Which group you are assigned to is random—decided completely by chance.

• One group will have access to [PROGRAM]. [PROGRAM] includes [DESCRIPTION OF PROGRAM].

• TEXT FOR SITES WITH MORE THAN TWO GROUPS: Another group will have access to [LIMITED PROGRAM]. This includes [DESCRIPTION OF LIMITED PROGRAM].

• Another group will not have access to [PROGRAM] [nor LIMITED PROGRAM] for [LENGTH OF EMBARGO PERIOD] months.

WHAT HAPPENS IF YOU ARE NOT SELECTED TO PARTICIPATE IN [PROGRAM]?

• Even if you are randomly assigned to the group that does not have access to [PROGRAM] [or LIMITED PROGRAM], you will still be part of the study. You will still be eligible to receive other services available in your community.

WHAT INFORMATION WILL BE COLLECTED ABOUT YOU AFTER TODAY?

• The researchers will contact you in about [FOLLOW-UP 1 TIME PERIOD] and [FOLLOW-UP 2 TIME PERIOD] to complete follow-up surveys. The surveys should each take about 50 minutes. You will receive a $40 gift card after completing the first survey and a $50 gift card after completing the second survey. Responding to the survey is voluntary.

• If you are assigned to [a/the] group that has access to [PROGRAM], you may be asked to participate in an in-person interview about your experiences with the program and employment more generally. It will take about two hours. You will receive a $60 gift card after completing this interview. Participating in the interview is voluntary.

• [PROGRAM] may share information about you, such as how much you are participating in the program, with the researchers. You are also giving permission for the program and researchers to use information collected about you for this study for program improvement and research purposes now, and in the future.

• The researchers may also collect information from administrative data sources. This information could include: [PREFILL FROM LIST RELEVANT TO PROGRAM²]

  • Information about your jobs from the Internal Revenue Service tax data and the National Directory of New Hires

  • Benefits received through Temporary Assistance to Needy Families (TANF); Supplemental Nutrition Assistance Program (SNAP); General Assistance; Special Supplemental Nutrition Program for Women, Infants, and Children (WIC); and the Unemployment Insurance (UI) program

  • Use of other employment programs or services in your community

  • Child support that you owe and pay

  • Health care use through [state specific Medicaid program] (this would include information on doctor visits, hospital stays, emergency room use, and prescription medications)

  • Disability benefits from the Social Security Administration

  • Involvement you have had with the criminal justice system

  • Information about educational attainment and completion from schools, school districts, state education agencies, and the National Student Clearinghouse

  • Housing, including participation in voucher programs

• We will use your name, sex, date of birth, and Social Security number to obtain this information from administrative data sources. The information requested may cover a period starting 2 years before you enroll in the study and ending up to 10 years after you enroll in the study. The information will not be used to make decisions about your receipt of benefits, or the amount of benefits you receive, from these programs now or in the future.

• We will share the data we collect from the study with other researchers to use in their research, but those data will not contain your name or other information that could identify you.

• [FOR SSA FUNDED PROGRAMS] The Social Security Administration will do additional research on how [NEXTGEN program] affects your earnings and receipt of disability benefits. They will do this research through 2028. They will use information such as your name, gender, date of birth, and Social Security Number to try and locate you in their records. They will only use your information to do research. The information will not be used to make decisions about any benefits you receive from the Social Security Administration, now or in the future. The Social Security Administration will not contact you directly.

• The researchers may use information about you to find alternative contact information from other sources.

WILL YOUR PRIVACY BE PROTECTED?

• Your name will never be publicly reported. No information will be reported in any way that could be used to identify you.

• All information that is collected about you will be used for research and evaluation purposes only. All information will be kept private and secure, unless the law requires otherwise, or you request release of your information in writing.

• The researchers have obtained a Certificate of Confidentiality from the National Institutes of Health. With this Certificate, the researchers cannot be forced to share information that may identify you, even by a court subpoena, in any federal, state, or local civil, criminal, administrative, legislative, or other proceedings. The only exception is that the Certificate does not prevent the researchers from sharing information that would identify you as a participant in the research project if you tell the interviewers anything that suggests you are very likely to harm yourself, that you are planning to hurt another person or child, or that someone is likely to harm you.

• A Certificate of Confidentiality does not prevent you from voluntarily releasing information about yourself or your involvement in this research. If you want your research information released to an insurer, medical care provider, or any other person not connected with the research, you must provide consent to allow the researchers to release it.

WHAT ARE THE RISKS OF PARTICIPATING IN THE STUDY?

• You may feel uncomfortable answering some questions. You can refuse to answer those questions if you wish, and it will not change your participation in the study or program. Although researchers will take many steps to protect all study information, there is a small risk that non-researchers could see it, including information about your employment and earnings. In addition, representatives from the [IRB NAME] may inspect and have access to confidential information as they ensure your rights as a study participant are protected.

CAN YOU WITHDRAW FROM THE STUDY?

• You can withdraw from the study at any time. To withdraw from the study, you must call Mathematica toll-free at [TOLL-FREE NUMBER] and provide written confirmation that you no longer want to be in the study. This can be sent to [MAILING ADDRESS AND/OR EMAIL ADDRESS]. Any information we collect about you prior to your request will be used for research purposes.

If you have any questions you can call Mathematica toll-free at [TOLL-FREE NUMBER]. You will be given a copy of this consent form to take with you when you leave.

Do you agree to participate in this study?

□ YES, I agree to be in this study.

□ NO, I do not want to be in this study.

[IF COLLECTED VIA HARD COPY]

Name (print): _______________________________________________________________

Name (sign): ______________________________________ today’s date: _______________

For Next Generation of Enhanced Employment Strategies Project Applicants Under the Age of 18:

Your parent or legal Guardian must consent to your participation in the study.

PARENT OR GUARDIAN:

• By checking the box below, I confirm that I have read and understood the description of the research study and the activities with which my child will be involved.

• I agree to the participation of my child in the study.

□ YES, I agree for my child to be in this study.

□ NO, I do not want to my child to be in this study.

[IF COLLECTED VIA HARD COPY]

Parent/Guardian

Name (print): _______________________________________________________________

Parent/Guardian

Name (sign): ______________________________________ today’s date: _______________

1 Note to OMB: All fill-in brackets will be customized for each intervention to be tested.

2 Note to OMB: We will always ask to collect data from the National Directory of New Hires. For most programs, we will collect administrative data from only three or four sources. We will tailor the consent form to each program accordingly.