Participant Engagement is Key
We’ve always considered how best to show participants they are valued members of the Connect community. This fall, we wanted to do something fun and unique to give back. The Connect teams at the NCI and Marshfield Clinic brainstormed a first-of-its-kind event for a small group of current participants– a casual research chat held at one of Marshfield’s clinics in Stevens Point, Wisconsin.
The research chat included rich discussion and a question-and-answer (Q&A) segment during which the Connect team addressed both pre-submitted and live questions and concerns from attendees. Participant attendees shared valuable feedback with the Connect researchers, ideas for engaging more participants in the study, and thoughts around future research possibilities with Connect data. Through a post-event feedback survey, we learned that participants left the research chat with a better understanding of the study, a greater sense of community, and a reinvigorated commitment to the important work we are all doing in Connect.
Here’s a breakdown of what happened:
What were the goals of the event?
- Increase participant knowledge of the study’s aims and future plans
- Collect feedback about ways to improve the study, as well as boost recruitment, retention, and activity completion
- Document learnings to use for future events and in planning engagement for the broader study community
Where was the event?
The event was held at the Marshfield Clinic Health System Stevens Point Center in Wisconsin.
Who was there?
Members of the Connect teams at Marshfield Clinic and the NCI. A small group of randomly selected Marshfield participants received an invitation to join the chat, and a total of 22 people attended.
How was the event structured?
The event began with a welcome message and introductions before the question-and-answer segment. The Q&A was moderated by Peggy, one of the Participant Advisory Board Members for Connect representing Marshfield Clinic. The event concluded with open Q&A and a request that attendees check their emails for a post-event feedback survey from our team.
What questions did participants ask?
Participants could ask questions before the event via the RSVP form, in real time at the event, and after the event via the feedback survey we circulated.
Question topics included:
- Cancer incidence trends, screening, and precision medicine/ targeted treatments
- Influence of artificial intelligence on cancer research
- Data security and long term plans for analysis
- Study timeline, length, and research plans
- Remaining in the study through life changes, such as a change in health care system, a move, or a cancer diagnosis
As a research study, Connect is building a resource for the future of cancer prevention science. The possible questions we could study with the data we’re collecting is vast and nearly endless. Participants at the research chat provided great suggestions for future research with Connect data, including looking into the impact of water sources and other environmental exposures on health and disease risk, and studying how diet, alcohol, and past drug use all potentially impact cancer risk. Connect is poised to address these questions and more.
What did participants think of the event?
After the event, attendees completed a short survey to share feedback on their experience and ask any clarifying questions or make suggestions for future events like this one.
Of the 22 total attendees, 18 people (~82% of attendees) rated the event as very informative. The remaining 4 (~18% of attendees) rated the event as somewhat informative. We were pleased to see this result, as it helped us realize one of our goals for this event.
All attendees responded “yes” when asked if they felt more knowledgeable about Connect’s scientific goals and study aims after the research chat and reported their understanding of Connect’s future plans and timeline for research improved as a result of attending the chat. This was great news! We also received positive feedback about the transparency of the research team and support for the goals of Connect as a research study overall.
Here are some of the comments we received from attendees:
- “It was great to have a discussion and in-person interactions with the Connect Cancer Study team. I felt more informed about the study and more apt to continue contributing to the research.”
- “Now that I know more specifics I am committed to recruiting more participants...”
- “Just thanks for including us. I know that it will improve retention. It makes us feel part of the team not just a lab mouse 😁”
- “Thanks for giving information back that may be helpful to us.”
Useful constructive feedback included the suggestion to add more time for the question-and-answer segment, using a microphone to help project and be sure all can hear, and structuring the beginning of the event when folks are arriving to facilitate a more comfortable environment for everyone to get to know one another. We heard all of this feedback loud and clear, and are poised to integrate improvements into future events to address these points.
Will an event like this happen near me?
It’s possible! We intend to use what we learned at our pilot research chat to inform future events, both in person and virtually. We’ve recorded each step of the planning, implementation, and evaluation processes.
We’re also using the feedback to bolster our FAQs for recruits and participants, and inform strategies that underpin the participant experience, from recruitment through long-term engagement and retention.
We’re so glad that this seminal event kicked off with our amazing team of partners at Marshfield Clinic Health System! We’re looking forward to continuing to plan events alongside other partner health care systems over the course of the study. Keep an eye out for more information from Connect, including opportunities to join events like this one in the future.