Frequently Asked Questions (FAQs)

A: The objective of this study is to establish a long-term participant registry to study obesity and overweight and weight management treatments. The purpose is to better understand factors contributing to obesity and long-term health outcomes in people living with overweight or obesity or those on treatment for weight management, including weight-loss drugs.

A: The American Heart Association is responsible for conducting the Healthy Living BEYOND Weight Study.

A: The American Heart Association funds more cardiovascular and stroke research than any nonprofit U.S. organization except the federal government. The American Heart Association is consistently ranked as a Top Trusted Nonprofit Brand and is a trusted leader in health science.

A: Ideally, you will participate over the next five to 10 years. Long-term participation is important to the Healthy Living BEYOND Weight Study. It allows data to be collected over time and for researchers to understand long-term health outcomes. However, taking part in the study is completely voluntary. You can drop out of the study at any time.

A: You will be asked to provide your name, email address, mailing address, gender, race and ethnicity. You also will be asked to provide your date of birth, confirming that you are at least 18 years old. Additionally, if you have an electronic health record (EHR) and wish to provide the Healthy Living BEYOND Weight Study with access to it, we will ask for your consent to do so.

A: Yes. You need an email address to participate, including setting up your profile and receiving updates about the study.

A: If you voluntarily choose to join the Healthy Living BEYOND Weight Study, you will be asked to:

• Take surveys
• Enter information about yourself in the study’s mobile app or website
• Connect your Electronic Health Record (optional)

You choose:

• What information to share
• Which surveys to take and questions to answer

When you give consent, that means you agree to let the Healthy Living BEYOND Weight Study researchers use the information you have provided for research.

A: An electronic health record (EHR) is a platform where your health care team digitally stores your health information. Think of it as an electronic version of your medical chart. Your EHR contains information about your health and the care you have received including diagnoses, medications, tests and treatment plans.

A: By participating in the study, you will be asked to complete an initial questionnaire. We also will send you surveys on a regular basis as well as email reminders to complete the surveys. We may also invite you to participate in other related studies through email or in-app notifications.

A: No. This study will not change your health care. The Healthy Living BEYOND Weight Study is not intended to provide medical care or interfere with your relationship with your own health care professionals. The information you provide to the Healthy Living BEYOND Weight Study will not be shared with your health care team.

A: The Healthy Living BEYOND Weight Study is NOT a weight-loss treatment program. The study is not intended to provide medical care. We are unable to provide specific treatments or medications for weight loss or maintenance.

A: No. Participation in the Healthy Living BEYOND Weight Study will not impact your insurance. You do not have to have health insurance to participate in the study. Your information will not be shared with any insurance providers. The Healthy Living BEYOND Weight Study is a research study. It is not medical care or a treatment program.

A: No. You will not be contacted by doctors, other health care professionals or researchers as part of this study. Authorized study team members may contact you about specific study opportunities.

A: You will not receive direct medical care or benefits from participating in the Healthy Living BEYOND Weight Study. However, you will be part of a community focused on improving health. We will provide articles and resources to help you with your health journey. You also will have access to your shared information and insights about the study community. The study will analyze participants’ data to find patterns and share discoveries with you.

A: Health research allows researchers and scientists to discover new findings to not only help improve people’s health but also enhance their quality of life.

A: Contact the Healthy Living BEYOND Weight study team at [email protected] or call us toll-free at (888) 242-2222.

A: Participants must meet the following criteria:

• Adults who are at least 18 years old
• Reside in the United States
• Are living with obesity/overweight with a BMI of 25 kg/m² (kg/m² is the standard unit for BMI) or higher OR have been prescribed a weight management treatment plan
• Have a BMI less than 25 due to ongoing weight management treatment such as weight-loss medications (GLP-1) or weight-loss surgery
• Have a valid email address.

A: You cannot join the study while you are pregnant. However, if you become pregnant once you’re enrolled in the study, you may stay enrolled in the study. Your ongoing participation will not be affected.

A: First, you will be asked to complete an initial survey. Then, we will ask you to complete follow-up surveys up to every month or quarter. These surveys will ask about your lifestyle, dietary and health habits, medications and medication adherence, side effects, weight, physical activity and quality of life. The surveys will vary in length, some being as short as 5 minutes and others taking up to 20 minutes. You will see information regarding “estimated time to complete” included in the details for each survey.

A: Yes, you may still participate. Participation in another study does not disqualify you from participating in the Healthy Living BEYOND Weight Study.

A: No. You will not need to visit a clinic or hospital to initiate or continue participation in the study. This is a direct-to-patient study. The information you share with us will be collected electronically through the study’s mobile app or website.

However, you may have the option of participating in additional studies that are a part of the Healthy Living BEYOND Weight Study. Some parts of these additional studies may have in-person testing, which may include lab work, scans, and the ability to connect wearable devices or sensors. You can choose or decline participation in these optional studies. Neither will affect your participation in the Healthy Living BEYOND Weight Study.

A: The risks are minimal. The main risk is the potential for data breaches. The Healthy Living BEYOND Weight Study will make every effort to protect your confidentiality. We have robust security measures in place to protect your information.

A: There is no cost to participate in the Healthy Living BEYOND Weight Study.

A: Details about compensation, if any, will be provided during the informed consent process.

A: Yes. Participation is voluntary. You can withdraw from the study at any time without any penalty.

A: Yes. You may withdraw and rejoin at any time. If you do withdraw and wish to rejoin, you will not be able to update your previous consent record. You will need to go through the sign-up and consent process again. To restart the consent process, you will need to use a different email address than the one used for your previous account. Any activities performed during your previous enrollment will not be linked or carried over into your new account.

A: You can choose to stop participating in the study at any time. If you no longer wish to participate, you will need to change your consent choices. To do so, follow these steps:

1. Go to “Account”.
2. On the “Profile” tab, look for “My Consents”.
3. Click “View your consents here”.
4. In the “Account” section, click “<Insert Main Consent name here>”
5. Click “Withdraw consent”.

By completing step 5, you will have successfully withdrawn from the study. Once you have withdrawn, you will no longer have access to the study’s mobile app and website and will no longer receive email communications.

A: Only people who currently live in the United States can join and participate in the study. If you are not planning to move out of the U.S. within the next 12 months, then you can sign up.

A: No. Your doctor or any health care professionals will not be informed of your participation in the study. You can choose to inform your doctor or others in your health care team about your participation if you wish.

A: The Healthy Living BEYOND Weight Study provides a way to report information about your health for research purposes. Please note that the study will NOT provide health care or prescribe participants any medication. If you experience any medication side effects, you should immediately contact your doctor or health care professional who has prescribed the medication. If your side effects are life threatening, call 911 immediately.

The Healthy Living BEYOND Weight study may ask survey questions that relate to side effects. However, this is purely for data collection purposes and researchers will not be able to address your side effect concerns.

A: You will receive reminders through email or mobile app notifications to complete any surveys.

A: If you miss a survey, you will receive a follow-up reminder. Consistent participation is highly encouraged to collect the best information for the study. However, missed surveys will not disqualify you from continued participation in the study.

A: If you cannot finish a survey in a single sitting, your progress will be saved for each completed page. Responses on incomplete pages of the survey will not be saved.

If a survey reaches its expiration date before you complete it, you will not be able to complete the survey.

A: De-identified survey responses — those that cannot personally identify you — will be used to study the conditions of overweight and obesity, as well as weight management drugs and treatments. This information can lead to improved treatment of health conditions. It also can help to inform future changes to care.

A: Information that can personally identify you, such as your name, date of birth, address and email, will not be shared. Only data with personally identifiable information removed will be used for research purposes. If you join the Healthy Living BEYOND Weight Study, we will only give out identifiable information if needed to meet U.S. research laws and regulations.

A: Your data will be encrypted, or converted into a code, and stored on a secure, HIPAA-compliant platform. (HIPAA is a federal law that restricts release of medical information.) No personal information that can identify you will be shared. Only authorized personnel will have access to your data.

A: Your privacy matters to the American Heart Association. The Healthy Living BEYOND Weight Study is dedicated to keeping participant data private and safe. Here is how the Healthy Living BEYOND Weight Study protects your data:

• Compliance with laws: The American Heart Association follows all federal, state and local laws to ensure your data is secure.
• Strict policies: The American Heart Association has strong rules and procedures to prevent any misuse of your information.
• Regular security checks: The American Heart Association frequently test our systems to make sure your data stays safe.
• Transparency: If there is ever a risk to your privacy due to a data breach, The American Heart Association will inform you immediately.
• Protected storage: Your data is stored on secure computers. The American Heart Association controls who can access it.
• Anonymize data: The American Heart Association removes any personal details that could identify you from the data.
• Researcher agreements: All researchers must agree to follow our data use rules, including not trying to identify you.

A: No. You will not be asked to provide your Social Security number.

A: Your individually identifiable information will NOT be accessed. All the information you provide will be de-identified when studied. This means that the data used in the study will not include your name, address or other personal information that can directly identify you. Only researchers approved by the Healthy Living BEYOND Weight Study will be allowed to see the study data. These researchers may be from anywhere in the world. They may work for commercial companies, such as drug companies, nonprofits, public agencies or academic institutions.

A: The results will be used to improve understanding of health risk factors, weight management and treatment, and new therapies. Findings may be published in scientific journals and presented at conferences. No individually identifiable results will be used or shared.

A: No. Your address, email address and phone number will not be sold or shared with unauthorized personnel. Authorized study team members may use this information to contact you about specific study opportunities.

A: Some participants may find answering personal questions about sensitive topics, such as lifestyle, weight, behaviors and medical conditions to be uncomfortable. As with any type of electronic study participation, there is a small risk of loss of privacy. The study team is dedicated to keeping participant data private and safe. We will do everything we can to protect your data.

A: An electronic health record (EHR) is a platform where your health care team digitally stores your health information. Think of it as an electronic version of your medical chart. Your EHR contains information about your health and the care you have received including diagnoses, medications, tests and treatment plans.

A: Yes. When connecting your EHR, you will need to provide certain information. Before you begin, have the following information:

• The name of the health system or hospital where you get your care
• Your login details (username and password) for MyChart (for Epic), CernerHealth or any other online medical portal

A: You will be able to connect your EHR directly through the Healthy Living BEYOND Weight Study mobile app or website. Below is the step-by-step process to do so:

1. Complete the Electronic Health Records consent card available to you in the app.
2. Connect your EHR from the new card that pops up.
3. Search for your health system/health organization by name and select it.
4. Type in your credentials.
5. Authorize the type of information you want to share. (We recommend you allow authorization for all options available. However, you have the choice to unselect any options that you wish not to share. Please note that all options are checked by default.)
6. Select a time period for which this authorization is valid if asked. (We recommend choosing one year.)
7. Agree to share your data.
8. Return to the app experience once the data transfer process is complete.

A: You can select which medical records or portions of your medical records you would like to share with the Healthy Living BEYOND Weight Study.

A: You will have the ability to connect EHR data from multiple health systems. If you receive care from more than one health system, you will need to go through the process twice to connect each system separately.

A: 1up Health, through their 1up Patient Connect system, provides a trusted and secure way for you to connect your EHR data. When connecting your EHR data through the Healthy Living BEYOND Weight Study mobile app or website, you will be redirected to the 1up Patient Connect system.

A: Every Health System has different requirements for how long your EHR data authorization lasts. It is important for the Healthy Living BEYOND Weight Study team to have access to new information over the course of the study. If your authorization expires with the Health System while you are still enrolled in the study, we may ask you to reconnect. To do so, go to the “Discover” tab for EHR connection and follow the reconnection instructions.

A: Your privacy matters to us. The Healthy Living BEYOND Weight Study is dedicated to keeping participant data private and safe. Here is how the Healthy Living BEYOND Weight Study protects your data:

• Compliance with laws: The American Heart Association follows all federal, state and local laws to ensure your data is secure.
• Strict policies: The American Heart Association has strong rules and procedures to prevent any misuse of your information.
• Regular security checks: The American Heart Association frequently test our systems to make sure your data stays safe.
• Transparency: If there is ever a risk to your privacy due to a data breach, The American Heart Association will inform you immediately.
• Protected storage: Your data is stored on secure computers. The American Heart Association controls who can access it.
• Anonymize data: The American Heart Association removes any personal details that could identify you from the data.
• Researcher agreements: All researchers must agree to follow our data use rules, including not trying to identify you.

A: You can disconnect an EHR by going to the Healthy Living BEYOND Weight Study’s mobile app or website. To do so, follow these steps:

1. Click “Connections”.
2. From "Active Connections", go to the "Electronic Health Record (EHR)".
3. Click “1up Health”.
4. Select the health system from which you want to disconnect.
5. Click “Disconnect”.
6. Confirm your decision to disconnect.

A: Yes. You can withdraw consent at any time. When you withdraw your Health Records Consent, the study team will disconnect any health systems you had previously authorized and will not pull any data from those systems going forward.

To withdraw a Health Records Consent, follow these steps:

1. Click “Account”.
2. Go to “My Consents”.
3. Click “View your consents here”.
4. Go to the Protected Health Information section.
5. Click “<insert EHR consent name>.
6. Click “Withdraw”.
7. Confirm your decision to withdraw.

Please note that withdrawal cannot be reversed. To resume participating in the program, you will need to register with a unique email address and sign a new consent form. You may have to repeat study activities that you previously completed.

A: You can earn points by completing activities in the Healthy Living BEYOND Weight Study mobile app or website. You will earn varying amounts of points by completing cards, such as taking surveys, reading articles and more. These points can be converted into gift cards or other reward prizes.

A: No. Points will not expire.

A: There is no cap on how many points you can earn or redeem for a reward.

A: Once you reach 10,000 points, you can claim your first $10 reward. Every 10,000 points after that also can be redeemed for $10. For example, if you earn 20,000 points, you can redeem 10,000 points for your first $10 reward, then redeem your remaining 10,000 points for another $10 reward.

Here’s how to redeem your reward:

1. Click the “Redeem” prompt next to the point total.
2. Click “Redeem your Points”.
3. Scroll down and click “Get your Reward”.
4. Go to your email to claim your reward. (The reward email will be sent to the email address associated with your Healthy Living BEYOND Weight Study account.)
5. Open the link in the email. This will take you to our reward partner’s page (Tremendous).
6. Select your reward.

A: You will not have the option to bookmark or share an article within the mobile app. However, the “Discover” tab will store expired/previously completed articles for an additional 90 days following the expiration of the card on the homepage.

A: Contact the Healthy Living BEYOND Weight study team at [email protected] or call us toll-free at (888) 242-2222.