Dorothy J BolerBoler, MS
"My life story has been one of changing and chasing dreams. Growing up, my ambitions were simple but the expectations from my family and teachers were high."
FREQUENTLY ASKED QUESTIONS
1. Why are you linking Project Talent records with Medicare records?
Because we cannot interview everyone who participated in Project Talent and it is expensive to gather detailed information about your health through a survey, we are working with the Centers for Medicare & Medicaid Services (CMS) to combine information from Medicare with your Project Talent data. We want to answer questions about the impact of earlier life experiences on health in later life and we can do that by connecting the responses you provided as a teenager in 1960 to Medicare information. For example, we could examine whether early life or other environmental factors can explain the prevalence of health conditions in later life, such as heart disease and diabetes.
2. What information is being linked?
Only Project Talent data collected in 1960 and in the follow-up surveys from 1961-1974 will be combined with any Medicare data provided by CMS. If you participated in a recent follow-up, none of that data will be included in the Medicare study.
3. Do I need to fill out a survey or other forms?
No, you don’t! The study uses existing data only so there is no need for Project Talent participants to mail back a survey or fill out any forms.
4. Do I have to participate in this study?
No, your participation in this study is voluntary. If you wish to participate, then there is nothing that you need to do. If you would prefer not to participate, please click on this link to let us know. You may also e-mail us at [email protected] or call our toll-free number: 1-866-770-6077.
5. How will Project Talent and Medicare records be combined?
AIR will send selected information on Project Talent participants, such as name, sex, and date of birth, to CMS. Then CMS will use that information to match individuals to Medicare records. If CMS finds a perfect match, then CMS sends the requested Medicare claims data to AIR for all of the matched individuals. All directly identifying information that may still be on the file, like name, are removed from the file before analysis begins.
6. Who will have access to the combined data?
Only researchers who are part of the AIR study team will be able to analyze the combined data for scientific research. The data will never leave AIR. In addition, CMS is very strict about who can access these data and how the data may be used. We will enter a formal agreement with CMS and only the researchers named on that agreement can analyze the data for very specific purposes. Researchers will not have access to your name, address, or other details that directly identify you.
7. Are there any risks or benefits to me for participating?
There are no known risks for having your record included in this study. With this information, researchers will build a baseline of social, psychological, and health data to study successful aging, retirement, and the effect of health policies. This study will provide information to policymakers and the public about how to improve the health of our nation’s seniors and how to plan for future Medicare funding.
8. Will you keep my information confidential?
Yes, we will. Because Project Talent collects personal information, we believe it is crucial to do all we can to protect the data we have. You can be assured that every protection is in place to ensure that your information is confidential.
AIR is committed to protecting confidentiality and privacy—this is a priority for AIR. Project team members receive annual training in confidentiality, privacy, and information security. All data are protected with complex passwords and there are protocols in place to maintain the security of the data. Physical access to servers and computers is also restricted.
9. How do I opt-out of the Medicare Linkage study?
We hope you choose to participate in the Medicare Linkage study. However, if you wish to opt-out, please click on this link to report your decision to us. We will need to collect your name and school information so that we can correctly identify you in our database and remove you from this study. Alternatively, you may contact us via email at [email protected] or call our toll-free number: 1-866-770-6077.
10. Who can I call for more information?
Please contact us if you have any questions. You may email us at [email protected] or call our toll-free number: 1-866-770-6077.
If you have concerns or questions about your rights as a participant, contact AIR’s Institutional Review Board (which is responsible for the protection of project participants) at [email protected] toll free at 1-800-634-0797 or c/o IRB, 1000 Thomas Jefferson Street, NW, Washington, DC 20007.