PART 1: PROJECT INFORMATION 

Project Title: From Health Disparity to Health Empowerment: Utilizing Natural Language Processing to Drive Community Health Equity.

Short Project Title: Exploring Health Equity through Digital Tools

Project Reference Number: 02-112023

Principal Investigator (the person in charge of the project): 

Dr. Jennifer Rae Myers

Executive Director of Research & Programming

jenniferrae@raymondbbanksfoundation.org

667.351.6925

Who is conducting this research study and what is it about?

You are being asked to take part in a survey project conducted by Dr. Jennifer Rae Myers who is the Executive Director of Research & Programming at The Raymond Banks ‘A Way With Words’ Foundation, a community nonprofit in Baltimore, MD. The purpose of this project is to see how using artificial intelligence can help us better understand health and healthcare experiences of individuals from different social groups at high-risk for cognitive-communication disorders like Alzheimer’s Disease.  Data from the project will be used to develop a  language-based artificial intelligence program to help identify important factors that affect the health and healthcare experiences of different communities as well as strategies to promote equal health for all. We anticipate 500 people will take part in the study.

 

PART 2: PARTICIPATION DETAILS 

What are the requirements to participate in the project?

To participate in the project you have to:

  1. Read and speak English well (fluently). 

  2. Have access to a computer with a stable internet connection and a microphone

  3. Belong to one (or more) of the following groups:

    • 65 years of age or older

    • Veteran

    • Low income

    • Non-white (e.g., Black, Asian)

    • LGBTQIA+

    • Disability

    • Previously unhoused/homeless

    • Previously incarcerated

    • HS Diploma only, GED, or didn’t finish high school

    • Non-native speaker of English

What will I be asked to do if I take part in the project?

You are asked to complete up to 6 surveys (details below).  It will take about 60 minutes  to complete the entire project which is broken up into two 30-minute parts. 

Part 1 - 30 minutes

During Part 1, you will answer general questions about yourself such as your age, education level, lifestyle , and health history (survey 1 and 2).  You will also be asked questions about your childhood experiences and how they may have affected your health (survey 3).  Your responses during Part I will be reviewed to make sure they are consistent  and have no errors. We call this a ‘validation’ process. 

Part 2 - 30 minutes

During Part 2, you will be asked to answer general questions about your mood (survey 4), your overall feelings about healthcare (survey 5), and to provide stories about your healthcare experiences (survey 6).  The stories you provide will be audio recorded and later transcribed.

What are the risks and/or discomforts I might experience if I take part in the study?

There are very few risks, like feeling tired of answering questions or feeling upset. Feel free to take as many breaks as you need. If a question makes you feel really upset, please stop the survey immediately. Any information we collect from you will be kept safe and private. If your personal information is accidentally shared it may also be considered a risk.  However, we have several data security plans in place to reduce the risk. 

If you decide to quit at any time before you have finished your answers during the Part 1 or Part 2 of the project, your answers for that part will NOT be recorded.

Are there any benefits to me if I choose to take part in this study?

There are no direct benefits to you for taking part in this project. However, your participation will help us  learn more about health challenges in different communities at high-risk for cognitive disorders and how artificial intelligence can help us do that in a more accurate and detailed way.  We hope results from this project will give communities the information they need to make healthcare better for the people who need it most. You will be able to view the project’s progress and results on our website, https://www.raymondbanksfoundation.org/research.

Will I get paid to participate in the project?

You will receive a $10 for successful completion of the project. Successful completion means your responses were consistent and free from significant errors (valid).

PART 3: DATA INFORMATION 

How will information about me be kept private or confidential?

All efforts will be made to keep your responses private or confidential, but total confidentiality cannot be guaranteed. 

We will use a secure online survey platform called re-view.ai to collect and forward your responses to us. Your responses will be assigned a random unique id code (e.g., UT4289). Your responses will be stored separately from your identifiable information such as your name and email address.  This is so other people will not know which responses are yours. After data collection is complete, your identifiable information will be destroyed so no link will exist between your identity and your responses. Any data collected from you will be stored in a password protected file and accessible by only people working directly on the project.  No information that can identify you will be shared or appear in any professional presentation or publication.  

What will happen to information I provide in the research after the study is over?

After information that could identify you has been removed, de-identified responses may be used by or distributed to other researchers for future research without obtaining additional consent from you. For example, the written transcript of your audio recorded responses, not the actual audio recording, may be shared. 


What will happen if I do not want to take part or decide later not to stay in the study?

Your participation is voluntary. If you choose to take part now, you may change your mind and withdraw later. If you do not click on the ‘submit’ button after completing the surveys, your responses will not be recorded.  You may also withdraw your consent for use of data you submit, but you must do this in writing to the Principal Investigator, Dr. Jennifer Rae Myers.  Please note that once the data has been de-identified after data collection is complete, your responses cannot be withdrawn as we will not know which responses are yours.

PART 4: INFORMED CONSENT

Who can I contact if I have questions?

If you have questions about taking part in this study, you can contact us at research@raymondabanksfoundation.org or 667.351.6925.  You can also contact the Principal Investigator (the person in charge of the project): 

Dr. Jennifer Rae Myers

Executive Director of Research & Programming

jenniferrae@raymondbbanksfoundation.org

667.351.6925

A copy of this form will be emailed to you for your record upon request.

If you do not wish to take part in this project, no further action is needed. If you wish take part in the research, follow the directions below:

By beginning this research, I acknowledge that I am 18 years of age or older and have read and understand the information. I agree to take part in the study, with the knowledge that I am free to withdraw my participation in the research without penalty.