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Did You Know: Returning Results

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Exciting Update: Receiving Information from Connect

Our core values in Connect are to be transparent about the work we are doing with your data and samples. To this end, we strive to return certain results and other research information back to you. Research data can be complex and that’s why the Connect team is committed to sharing background and resources to help participants understand the results and information we plan to return. 

What's Coming Up?

We’re excited to start sharing personal results with you through MyConnect! The first type of information we’ll share is about physical activity. This information is based on your answers to certain questions from the first Connect survey. Physical activity is important for cancer prevention and overall health. In your report, you’ll be able to see how your physical activity compares to national guidelines, and we'll share some tips and resources to help you improve your physical activity. 

What About Results from Samples?

We will share some results from the study of your samples with you and let you know when they are ready. However, we haven’t started studying the samples you donated for Connect yet, and it will take some time before we do. Your samples are stored safely for future research. Think of your samples like a time capsule. We keep them for many years so researchers can look back and see how cancer develops and what causes it. Just like a time capsule holds items from the past, your samples can help researchers understand changes in our bodies over time. By comparing samples from people who got cancer to those who didn’t, researchers can learn important things about finding cancer early, understanding risks, and the history of the disease. This knowledge can help researchers find better ways to prevent and treat cancer in the future. 

Because of the questions we are asking in Connect, most tests on your samples will not be run for a while. New ways to study cancer prevention and early detection are always developing, so some tests we will run in the future might not even exist yet!

How Will Connect Return Information?

We will send you a message when new results are available. When you log into your MyConnect account, you will see a new page called “My Reports.” There, you’ll find details about the information we plan to share that will help you understand your reports. You can choose whether you want to read each report we make available. We will always return results and information securely to you through MyConnect so that you are the only person who will have access to your individual results. 

What Can You Do? 

  • View and Download Reports:  If you decide to read a report, you can download and save it in your records. 
  • Decline Reports: If you don’t want to see a report when it becomes available, you can decline to view it. You can always change your mind later. Your report will be available to you whenever you want to read it. 
  • Share Information: Connect will never add results to your medical record or share them with your insurance. You are welcome to share the information yourself with your healthcare provider, family, or anyone else. 

Why Returning Information Is Important

Participants want to know what is happening with their data and want to see results from the study of their samples and information. Further, it is part of our ethical conduct of research to share information from the study back with participants. The Connect team, including experts and members from different groups, follow clear guidelines for how we return this information to you.

Understanding How We Share Information with You: Our Guiding Principles

We want to explain how we decide what information to share with you from research done with Connect data. A set of guiding principles helps us decide how and when to share certain results and information with you. We balance the benefits and potential risks of sharing information from surveys, lab tests, and other data sources. 

Who Are These Principles For? 

Our guiding principles help the leadership of Connect and other key groups involved in the study. These principles are informed by recommendations from the National Academies of Science, Engineering, and Medicine 2018 report, Returning Individual Research Results to Participants: Guidance for a New Research Paradigm.

How Will These Principles Be Used? 

These principles help us make smart choices about what information to share and how to share it. They will guide us in making decisions and putting our plans into action.

Guiding Principles

Here’s a breakdown of our guiding principles:

  1. Involving Everyone's Opinions: 

  • We want to hear from both researchers and participants about what types of information are important to share. Consulting the Connect Participant Advisory Board (a group of advisors from each of the partner health care systems) is one way we will start to understand participant preferences. 

  1. Your Data Belongs to You: 

  • We respect you and your data. Sharing information with you is a way to show appreciation and build trust. It should make your participant experience better, be informative, and encourage you to engage with the study over time. 

  1. Your Choice Matters: 

  • You can choose whether to receive information or not. You can change your mind at any time based on what is important to you and be selective when it comes to choosing to view or decline the results we share.  

  1. Getting Ready to Decide: 

  • We will provide clear educational information and details through MyConnect to help you make informed choices. These materials will explain the benefits and possible risks of receiving certain results and information. 

  1. Explaining the Details: 

  • We will share how we gather and use your data, including any outside sources we might use. To help you understand your results and decide what to do with the information we share, we’ll provide resources from trusted organizations and point you to local resources if needed. 

  1. Keeping Your Information Safe: 

  • Your privacy is important to us. We won’t add your research results to your health record or share them with anyone, including your provider and health insurance. We have special protections in place to keep your information private. You can choose to share your results with your healthcare provider, family members, or anyone else if you wish. 

Considering Trade-Offs 

When deciding what results to share, we consider its importance and relevance. There are different types of results that Connect may return, including those with clinical significance, unknown clinical significance, and non-clinical significance. Each of these results has different risks and potential benefits associated with them, so we will consider them on a case-by-case basis.  

Information with established medical guidelines and information that has no immediate health impact may be useful in different ways. You will have the opportunity to decide if you want to receive each type of result.

Looking Ahead

This is just the beginning! As the study continues, we will share some individual results and information with participants from time to time. We’re always here to listen to your feedback and answer any questions you might have.  

If you have concerns or suggestions, feel free to reach out to the Connect Support Center. We are open to learning about your preferences so we can improve the way we return research results. 

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