Rounding out our Study Voices panel for BBK's keynote “Do Engagement Tools Live Up to Their Hype?” is panelist, Annie Finstein. She is looking forward to sharing her experience as a patient and participant in a clinical research study on February 19 at the SCOPE conference.
Annie was diagnosed with Crohn's disease in 2000 at nine years old. After trying all available medications approved for pediatric patients at that time, she participated in a pediatric study at Massachusetts General Hospital in Boston. Now in her late 20s, she enjoys spending time at the beach, hiking, cooking and gardening at her home in Boston. Annie is committed to making a difference and connects with other patients impacted by Crohn’s disease by running half marathons with Team Challenge, the Crohn's & Colitis Foundation’s endurance training and fundraising program.
What was most rewarding to you as a participant in a clinical research study?
It was most rewarding to know that I was helping advance the treatment of Crohn’s disease for pediatric patients, and that my participation might not only help me but also other kids suffering from inflammatory bowel disease (IBD).
You relied on your parents’ care for your overall wellness. Looking back, can you identify any challenges they may have faced to help you participate?
Yes. My mother had to get me to and from appointments. She not only had to take time off from work, but appointments were often very early in the morning and we would drive 30 minutes into Boston in the dark. I remember a lot of vouchers for parking and food. Looking back, it would have been nice if she was supported with an app – provided by the study team – to help keep everything organized.
Do you feel you had enough time with the doctor and staff during the study?
I would have liked to spend more time with the doctor to keep updated on my progress. My primary interactions were with the staff and nurses.
Would you consider participating in another clinical trial? And if so, what would be important for you to know in order to consider a specific clinical trial?
I would consider participating in another clinical trial. However, there are certain things I would want to know. For instance, if the study is examining an investigational drug, I’d want to know how it is designed to work and how it may be different from other drugs I’ve taken. I would want to know if other studies had been completed and, if so, what the results were. I’d also want to know the frequency of visits, length of study participation, any known side effects, and likelihood that I might receive placebo. After learning about the study, I would consider participating if I believed it would help treat my condition or help advance research.
Would travel assistance to and from study appointments influence your decision to participate in a clinical trial?
Travel assistance wasn’t offered when I participated in my clinical trial. That said, I believe travel assistance would influence my decision. A travel service would be extremely helpful for people with chronic conditions like me. I think anything that would alleviate some of the burden of frequent doctor and lab visits – making participation easier and less stressful – would be beneficial.
How do you stay informed of the latest treatment options for your condition?
I'm in a unique situation where I know there aren't any approved medications remaining for my condition that I haven't already tried. That being said, I tend to do my own research on alternative medical options, in addition to asking my doctor about the latest research. I'll often discuss my alternative medicine findings with my doctor to keep him updated and get his opinion.
It sounds like you have a good relationship and open dialog with your doctor.
I do. I value my gastroenterologist’s opinion. He is very open, supportive and understanding of the research I do on my own.
Does your doctor alert you to new clinical trial opportunities?
Yes, he does. I recently participated in a research study. Unfortunately, I typically don't meet the eligibility criteria for most IBD studies, but I am open to hearing about new opportunities.
As a patient, what is your main message you would like to share with the medical community about clinical trial participation?
I would share that considering and participating in a clinical trial is both an exciting and uncertain time for patients. Providing patients support in addition to the core information is important.
For people considering clinical trial participation, I would share that clinical trials can offer an exciting and hopeful opportunity to not only treat yourself, but to also help others. Take advantage of the resources around you; the doctor, nurses and site coordinator. I would tell them not to be afraid to ask questions about the treatment or for additional resources to help make the study more comfortable for you and your caretaker.