To improve your experience on Lilly TrialGuide, please use the latest version of Chrome, Firefox, Safari, or Internet Explorer, with JavaScript enabled.
This website is not optimized for your browser, as configured.
Participation

The Balance of Clinical Trial Participation

Patient interviewee and Lilly interviewer

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 shares her experience on how she found out about the clinical trial. Embedded content: https://www.youtube.com/watch?v=7gVBan1VFAs

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.

Melissa shares the two factors that were most important to her as she considered trial participation. Embedded content: https://www.youtube.com/watch?v=PQoJj5GewmU

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 talks about the support of friends and family before and during her clinical trial participation. Embedded content: https://www.youtube.com/watch?v=7TD4IknD7p4

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. 

Melissa, a past Lilly clinical trial participant, is candid about the time commitment required for clinical trial participation. Embedded content: https://www.youtube.com/watch?v=IkCQP610sSU

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.

Melissa tells us about a surprise connection that resulted from her clinical trial experience. Embedded content: https://www.youtube.com/watch?v=vqDUXCYt-jA

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. 

Melissa gives us ideas on how to make clinical research better. Embedded content: https://www.youtube.com/watch?v=Z7pPVBv_cj4

Visit our list of recruiting studies to see if a clinical trial may be right for you, or connect with us on Twitter to share ideas for making clinical research better. 

Tags: Patient Stories, Video,

Recent Articles

AHerosJourneyThroughClinicalTrials2-14-2020

A Hero’s Journey Through Clinical Trials

Leigh Anne Naas Headshot
Leigh Anne Naas
February 14th, 20203 minute read

In collaboration with artist John Magnan, we launched a crowd-sourced art project dedicated to clinical trial participants.

InternationalDayofWomenandGirlsinScience FeatureImage 10Feb2020

A STEM Career in Clinical Research

Ayana Rowley Henderson Headshot
Ayana Rowley Henderson
February 11th, 20205 minute read

Read this spotlight on MaryAnn Morgan Cox to learn more about how women in STEM are making a difference.

WhatisClinicalTrials.gov FeatureImage 9Jan2020-01

Infographic: What is ClinicalTrials.gov?

Ayana Rowley Henderson Headshot
Ayana Rowley Henderson
February 4th, 20204 minute read

2020 marks the 20th anniversary of the site, but what were the site's origins and intentions?

BackToSchool Protocol FeatureImage 27Aug2019-01

What is a Protocol in Clinical Trials?

Susan Gilchrist headshot square
Susan Gilchrist
December 10th, 20195 minute read

Have you ever wondered how schedules, tests, and the information ever comes together in clinical trial? It all starts with a clinical trial protocol.

SCRSInterviewBlog FeatureImage 27Nov2019

Clinical Trials 2020 trends, as told by #SCRS19

BlogAuthor Don2 3Dec2019
Don Harder
December 5th, 20197 minute read

After attending SCRS19, four key insights emerged for clinical trials in 2020 and beyond.