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Findings from the 2024 Connect Experience Survey

Welcome Back!

You may have noticed that this website has a fresh look! We hope you enjoy the new layout. As always, we welcome any feedback you have. Now, on to the good stuff. I’m looking forward to sharing some insights with you from a recent survey we sent to Connect participants.  

Connect Experience Survey: Insights & Next Steps

We sent out the 2024 Connect Experience Survey to participants who joined Connect between March and July 2024. This group of 16,000 participants was selected because they enrolled after the baseline study activities were in full swing. 

As of late February 2025, 7,671 participants invited to complete the survey have done so —an impressive response rate of about 48%!

Key Findings

The 2024 Connect Experience Survey asked a variety of questions about different aspects of the participant experience and engagement preferences, with the goal of collecting information to help improve the study for all participants. We learned a lot about participants' experiences using MyConnect, how often they wanted to complete study activities and receive messages, and how completing their first survey and donating their first samples went. We also asked about motivations for joining Connect. Together, the data we gathered are being used to inform study operations and participant communications.

Takeaways 

Survey Preferences: Close to 60% of the survey respondents prefer shorter, more frequent surveys rather than longer surveys sent less often. 

Motivations for Joining: Participants could select multiple options from a list. The top reasons participants cited for joining the study were:  

  • A personal connection to someone affected by cancer 

  • An interest in being involved in cancer research 

  • A desire to help others 

Overall Connect Experience: 58% of participants rated their Connect experience as “very good,” while about 30% rated it as “good.” That’s nearly 90% of respondents giving a positive rating! This is great news, motivating us to continue to ensure that participants remain engaged as valued members of the Connect community.  

Acting on Your Feedback

We appreciate the thoughtful feedback that participants shared in the survey. Here’s how we’re responding: 

  • Improving Communications: Some participants expressed a need for clearer expectations around sample donations (e.g., receiving mouthwash home collection kits, donating urine alongside a blood sample, and the need to stay properly hydrated before donating samples). We are refining our communications and reminder messaging to improve clarity. 

    • A quick note on mouthwash home collection kits: Many participants had questions about whether they would receive a mouthwash home collection kit. The Connect lab is still piloting the mouthwash at-home collection. This means our lab team is working out the process to ship and receive completed kits with saliva samples back from participants. Not every participant will receive a mouthwash home collection kit; if you already donated a saliva sample for Connect, you should not expect to receive a mouthwash home collection kit. If you’ve donated blood and urine samples but not saliva, we may send you a home collection kit in the future. The best way to know when we send your kit is to check your messages from Connect. We'll alert you as soon as we ship your kit so you can prepare to receive it from FedEx within just a few business days.  

  • Survey Development: Given the preference for shorter, more frequent surveys, we are discussing options for future surveys with our survey team. 

  • Recruitment Messaging: Insights on participant motivations are informing an experiment on effective messaging for future recruitment efforts. 

  • Ongoing Engagement: We reviewed anonymized open-ended responses and are continuing to discuss how best to address participant concerns and enhance the Connect experience to engage participants throughout this long-term study. 

Thank you to everyone who took the time to complete the survey! Your input is invaluable in shaping the future of Connect. Stay tuned for more updates as we implement improvements and continue to monitor feedback.  

Striving for Improvement 

We know that not everyone had an opportunity to take part in this survey. It served as a starting point for gathering data on this topic. We plan to send out future surveys to collect feedback about the participant experience and use various channels, including qualitative interviews, to better understand what’s working well and what we can improve.  

The Connect Support Center remains the best place to go to share any suggestions, concerns, questions, or comments you have for us. We are always open to your feedback! 

 

               Mia Gaudet, Ph.D.
               Connect Senior Scientist
               Division of Cancer Epidemiology  and Genetics
               National Cancer Institute

  • Updated:

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