Share Your Data With Confidence

You are being asked to participate in a research study. Scientists do research to answer important questions that might help change or improve the way we do things in the future. This document will give you information about the study to help you decide whether you want to participate. Please read this form, and ask any questions you have, before agreeing to be in the study.

All research is voluntary. You can choose not to take part in this study. If you decide to participate, you can change your mind later and leave the study at any time. You will not be penalized or lose any benefits if you decide not to participate or choose to leave the study later.

The purpose of this study is to amplify the voices of Indiana residents whose income may qualify them for Medicaid. We seek to understand how people experience health equity challenges and barriers and how local organizations address them.

We are asking you if you want to be in this study because you are or were enrolled in Medicaid; you may be eligible but are not enrolled in Medicaid; you work for a community, healthcare, or social service organization; or you understand local conditions affecting health equity and healthcare access for low-income residents. The study is being conducted as a partnership between Dr. Ivan Douglas Hicks, The AfricaLogical Institute, and Dr. David Craig, Indiana University Indianapolis. It is funded by the Indiana Minority Health Coalition.

If you agree to be in the study, you will do one or more of the following: 1) Participate in an in-person or virtual focus group, called a Community Expert Gathering, lasting up to 90 minutes, which will be audio- and video-recorded. You may choose to participate in more than one focus group. 2) Complete a 7-minute survey after attending a Gathering. 3) Share a story, up to 5 minutes, of your experiences with Medicaid, by text, audio, or video, at The AfricaLogical Institute's website. 4) Request and participate in a virtual, phone, or in-person interview, lasting up to 30 minutes, with a research team member to learn about your Medicaid story.

Before agreeing to participate, please consider the risks and potential benefits of taking part in this study. You may be uncomfortable answering questions in a Gathering, survey, or interview. During any part of the study, you can skip any questions that make you uncomfortable or that you do not want to answer.

There is a small risk someone outside the study team could get access to your research information from this study.

There is a risk that people may repeat what you say during a Gathering and name you publicly. Participants are asked not to identify other participants without their prior permission.

If you agree to be identified publicly (see below), you have the option to use a pseudonym or your real name when you share your story. Please share only the information that you want to make public. For example, you may not want to share personal health information. If you are enrolled in Medicaid, sharing income or household information that disqualifies you from Medicaid could be harmful to your financial situation.

A benefit to you from taking part in this study is sharing community voice. We also hope to learn things that will help Medicaid members, low-income residents, policymakers, and researchers in the future.

You will not be paid for participating in this study. There is no cost to participate in the study.

If you agree, we may identify you when sharing your words, voice, or image publicly. To consent to be publicly identified, please check the consent box below this sheet and enter the name you want us to use.

If you wish to schedule a follow-up interview with our research team, write your name and best contact information below this sheet. We would use this contact information only to schedule an interview with you. The information sent over text or email could be accessed or read by someone other than you.

If you choose to keep your identity private, then you can participate in any of the research activities. We will protect your information and make every effort to keep your personal information confidential, but we cannot guarantee absolute confidentiality. No information which could identify you will be shared in publications about this study unless you agree to be named publicly above or if you subsequently give permission to share specific information that is attributed to you.

Written stories, audio recordings, video recordings, and transcripts will be accessible to Drs. Craig, Hicks, and their research associates who are trained in research with human subjects.

Your personal information may be shared outside the research study if required by law. We also may need to share your research records with other groups for quality assurance or data analysis. These groups include the Indiana University Institutional Review Board or its designees, and state or federal agencies who may need to access the research records (as allowed by law).

If you have questions about the study or encounter a problem with the research, contact the researcher, Dr. David Craig at 317-274-3689 or davcraig@iu.edu.

For questions about your rights as a research participant, to discuss problems, complaints, or concerns about a research study, or to obtain information or to offer input, please contact the IU Human Research Protection Program office at 800-696-2949 or at irb@iu.edu.