The Balance of Clinical Trial Participation
Through programs like CoDESIGN, we are able to meet with patients to get input to help shape and improve upcoming research studies, but it’s rare for us to have the opportunity to talk with someone who has previously participated in a Lilly clinical trial. We recently got the chance to chat with Melissa, who participated in one of our Phase 3 studies. She visited our headquarters office in Indianapolis to share a bit about her experience.
Making an Informed Decision
Melissa said the most important thing for her decision to participate in the year-long study was to learn all she could about the drug being researched. She read about the known side effects and wanted to know how many people had already received the study medication in previous research studies.
We chatted about the informed consent process versus the informed consent document. While the document is signed at a single point in time at the start of the study, information about the study comes before, during and after the trial. Melissa said she was continually given the opportunity throughout the study to ask questions and understand what was expected of her and how her data would be used.
Take-away message: Learn all you can about a research study so that you can make an informed decision about participating.
Developing Support Systems
Melissa relied on a network of people to support her before and during the research study. She discussed her decision to participate with her parents and with friends who have a medical background. She valued their insights. She also talked with her husband, who ended up providing valuable support and encouragement during the trial.
Melissa told me about the challenges of driving to clinic appointments every 2 weeks or every 4 weeks for a whole year. The appointments were long and often required her to take time off work to attend them. Sometimes, she just didn’t want to drive downtown to the research center and go through the hassle of parking and doing all the clinical assessments. Her husband was often the one who encouraged her to stick it out and see it through.
Outside of the clinical trial setting, Melissa has also found support through her online community: a private Facebook group of people with her same condition. She said it can be really helpful to have a place to connect with people who truly know what you’re going through.
Take-away message: Online or offline, find a support community to help you with your disease and with research participation.
In Her Own Words
Melissa was gracious enough to let us record our conversation. The theme that resonated throughout our chat was around finding balance: balance between the burden of the extra clinic visits and the positive experience of being in the study. Watch the video to hear her story in her own words.