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consent1I have read and understood the information about this study and: consent
consent2I have read and understood the information about this study and: consent two
info3THE PURPOSE OF THIS STUDY

We are interested in learning more about the financial and health situation of older U.S .residents all across the country. We also want to help organizations that affect all our lives, such as federal and local governments understand the priorities and needs of people living in America.

You are invited as a possible participant because you are a member of the Understanding America Study online panel, you are 65 or older, and you are enrolled in Medicare or Medicaid. About 5000 UAS participants may take part in the study. This research is being funded by the National Institute of Aging, and the Social Security Administration.
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info4STUDY PROCEDURES

If you decide to take part, this is what will happen: Your Medicare and/or Medicaid numbers will be used to locate your Medicare and/or Medicaid data. Your numbers or other identifiers will then be replaced with a study code, to protect your privacy. This is called “anonymizing” the data.

We will use the study code to combine the data with your survey data. These combined files (which will not include any names or other personal identifiers) will be kept in what is known as a “secure enclave” which means a computer that can only be accessed by a few researchers, and only for very specific purposes. Your anonymized data, combined with all other participants, will be used by researchers to create statistics, charts, and publications.

If you do not know your Medicare number, we can use the last four digits of your social security number, and/or your name, address, sex, and date of birth, to locate the records.

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info4aALTERNATIVES TO PARTICIPATING

Participation in this study is completely voluntary. The alternative to participating in it is to indicate that you do not want to participate, when we ask later in this survey.

We very much appreciate your participation in our UAS surveys, and whether or not you decide to participate in this or any other UAS project,you will continue to be a member of the Understanding America Study.
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info4bPAYMENTS

You will not be compensated for your participation in this research, other than the compensation you will earn for reading this information and completing this survey. If you decide to participate, you will earn an additional amount for the extra time it takes to provide the information.
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info5RISKS AND DISCOMFORTS

If you decide to take part in this study, the possible risks and discomforts you could experience in the study are minimal: There is a small risk that people who are not connected with this study will learn your identity or your personal information.

BENEFITS

There are no direct benefits to you from taking part in this study. However, your participation will help us learn how health, access to healthcare, and finances affect Americans’ lives. It may also help us understand how better to inform Americans about the choices that are available to them.
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info6PROTECTING PRIVACY AND CONFIDENTIALITY

We will keep your records for this study confidential as far as permitted by law. However, if we are required to do so by law, we will disclose confidential information about you.

Efforts will be made to limit the use and disclosure of your personal information, including research study and medical records, to people who are required to review this information.

For example, the University of Southern California’s Institutional Review Board (IRB) or Federal representatives may access your research records for the purpose of protecting human subjects in research projects. They will not disclose your personal identifying information to anyone else.
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info6aThis research is covered by a Certificate of Confidentiality from the National Institutes of Health. This means that the researchers cannot release or use information, documents, or samples that may identify you in any action or suit unless you say it is okay. They also cannot provide them as evidence unless you have agreed. This protection includes federal, state, or local civil, criminal, administrative, legislative, or other proceedings. An example would be a court subpoena.

There are some important things that you need to know. The Certificate DOES NOT stop reporting that federal, state or local laws require. Mostly these are not applicable to this research, as they are laws that require reporting of child or elder abuse, some communicable diseases, and threats to harm to yourself or others. The Certificate CANNOT BE USED to stop a sponsoring United States federal or state government agency from checking records or evaluating programs. The Certificate also DOES NOT prevent your information from being used for other research if allowed by federal regulations.

Researchers may release information about you when you say it is okay. The Certificate of Confidentiality does not stop you from willingly releasing information about your involvement in this research. It also does not prevent you from having access to your own information.
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info6bHow will the data from this study be used in the future?

Data collected as part of this research will be used or distributed for future research studies without any additional informed consent. Information that identifies you (such as your name) will not be in the information that is shared with others for research.
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info7VOLUNTARY PARTICIPATION and CONTACT INFORMATION

It is your choice whether or not to participate. If you choose to participate, you may change your mind and leave the study at any time. Refusal to participate or stopping your participation will involve no penalty. If you stop being in the research, already collected data may not be removed from the study database. You will be asked whether the investigator can continue to collect data from your records. If you agree, this data will be handled the same as the research data. No new information will be collected about you by the study team without your permission.

This research has been reviewed and approved by the USC Institutional Review Board (IRB). The IRB is a research review board that reviews and monitors research studies to protect the rights and welfare of research participants. Contact the IRB if you have questions about your rights as a research participant or you have complaints about the research. You may contact the IRB at (323) 442-0114 or by email at irb@usc.edu.

If you have questions, concerns, or complaints, or if you choose to withdraw after you have decided to participate, contact the study investigator Arie Kapteyn by phone (855) 872-8673 or by email (uashelp@usc.edu).
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