Informed Consent Form

Attachment D: Informed Consent Form

The World Trade Center Health Program: Impact Assessment and Strategic Planning for Translational Research

Focus Groups

Background: Thank you for your interest in participating in our focus groups. The World Trade Center Health Program (WTCHP) has hired the RAND Corporation to conduct an evaluation of WTCHP research and how it has translated into better health and well-being for our members and will make recommendations for future research investments. If you help us with this evaluation, you will participate in a 2-hour focus group where we would ask you questions about WTCHP research and gather your opinions about it. There are no right or wrong answers and we would like to hear all of your thoughts.

Risks and Benefits: There is not much risk to you for participating, but you may be asked about things that remind you of the events of September 11th. [FOR FUNDERS ONLY: Because you work for NIOSH, you may not want to say anything negative about your employer and may feel that there is a risk to your job if you do.] This project may have benefits to you and others in the WTCHP because we hope that our work will help identify ideas that could improve WTCHP research over time. If we hear about things that could make program research better, we will share them with the WTCHP.

Privacy Safeguards: We will not share your name with anyone outside of our project team or with the WTCHP. If we do quote you in any of our work, we will not use your name and will make sure that no identifying information is used in our reports. Focus group responses will be securely stored on the investigators’ password protected computers and password protected shared drive. Any hard copies of the data will remain in the possession of the RAND principal investigator at his locked office. All data will be destroyed (i.e., shredded or erased) when their use is no longer needed but not before a minimum of five years after data collection.

Contact information:

• If you have any questions about the project itself, please contact: Liisa Hiatt at [email protected] or (310) 393-0411 x6221

• If you have questions about your rights as a participant in these focus groups or need to report a project-related concern, you can contact RAND's Human Subjects Protection Committee toll-free at (866) 697-5620 or by emailing [email protected]. If possible, when you contact the Committee, please reference Study #2017-0666.

Participation: Taking part in this focus group is completely voluntary. You do not have to participate. If there are any questions that you do not want to answer during the focus group, you do not have to answer them. If you decline to take part, there will be no harm to you or loss of any employee benefits. You may withdraw from the focus group at any time if you do not wish to continue and there will be no harm to you or loss of any employee benefits.

Thank you again for participating.