A Day In The Life Of A Wannabe Clinical Trial Participant: Desperately Seeking Recruitment
By Leanne Woehlke, Host of the Clinical Research Coach podcast
I wasn’t actively searching to participate in a clinical trial; I just stumbled upon it when researching a new primary care physician. You know how it goes: you click on a website, then before you know it, something catches your attention and with a few more clicks you find yourself down a rabbit hole wondering, “What was it I was looking for?”
That’s how it happened.
Doing a bit of poking around to get a feel for the vibe of the office, I clicked “Therapies and Services” on the menu. Then, beckoning me like a piece of dark chocolate at midnight, on the very bottom of the menu were those magical words, “Clinical Trials.” Before I knew it, my fingers clicked and I began scanning the page for the available options. A well-groomed doctor smiling from the YouTube thumbnails announced, “Clinical Trial Opportunity - Recruiting Participants…” I scoured the page, trying to identify said opportunity.
My eyes glazed over at the “official title” — lots of scientific speak with words someone without a medical degree would likely find hard to understand, let alone pronounce. Then there was the magic word, “longevity.” My interest was piqued!
Anticipating a new spring in my step, I excitedly clicked the blue “Learn More” button and willingly shared my personal health and contact information… even my age! Quite a feat for a woman who reluctantly qualifies for AARP!
I waited patiently, at least for the first 30 minutes, for a call from the research coordinator. As someone who sets up call centers and recruitment campaigns for clients, I have a few opinions on how these things should go.
Eight hours and still no word from the center. I began to wonder if I mistyped my phone number in the form. Then I thought, “I’ll check my email to see if they sent an email instead…” Nope. No email.
Hmmm… did I not qualify? I began to feel like I was living Bob Marley’s song, Waiting in Vain.
I rationalized, maybe they are very busy. Clinical research coordinators are some of the most overworked people on the planet.
After finishing my workday, I headed to the gym and assured myself they’d call in the morning.
Morning came and went. No call. No text. No email.
By this point, I tried to convince myself that I didn’t want to participate in the trial anyway. I rationalized, “I’m busy. I don’t have any major medical condition for which there is no cure. I have good medical insurance. Who needs a stinking clinical trial anyway?”
I decided to call the center, just to find out for sure. This began to feel like a bad dating situation.
Phoning the center, I reached the study coordinator, who explained in her southern drawl, “I’m just heading into the clinic with a patient. Can I call you back later?”
I agreed but wasn’t entirely confident I’d hear from her. If it was this difficult to get preliminary information, did I really want to participate in the trial?
As someone who works in life sciences, I’m well aware of the challenges of recruiting patients and the resulting cost of delays. When I can order something on Amazon and it arrives on my doorstep tomorrow, I’m primed to expect the same sort of timeliness and customer service in every aspect of my life, including clinical trials.
With over 80% of trials delayed due to low or slow enrollment and estimated costs for delays reaching between $100,000 and $600,000 per day1, you’d think efforts should be made to ensure every potential patient is followed up with in a timely manner. Yet here I am, proof that that is not lived reality.
In a recent study, 91% of sites stated they did not have adequate staff to perform recruitment activities and 78.8% of sites stated they did not have a clear recruitment strategy or assigned responsibilities for the recruitment plan.2
Years ago, it was groundbreaking to have a website for a clinical trial. Now it’s a necessity. And it had better load within 2 seconds, or I’m gonna bounce.
Patients expect a study website to be optimized for mobile with a clear, easy to read font and no weird margins or awkward spacing. They expect plain language they can understand, more like People Magazine, less like JAMA. Simple things like failing to optimize picture size or getting too fancy with multiple fonts can come across as confusing or unprofessional. And let’s be honest, if there are huge blocks of tiny text, I’ll open a new browser window and be shopping on Amazon faster than you can spell randomization.
Patients expect communication – immediate, clear, and frequent.
Given that study coordinators are often overworked and patients are impatient (maybe just me), how can we reconcile these two seemingly at odds situations?
I’ve seen “recruitment manuals” floating around that claim to “clearly” lay out recruitment plans for sites. But truthfully, a research coordinator did not go into the field secretly hoping they were going to be a digital marketing or call center genius. Even if those manuals make it seem “easy” to master Facebook ads, I can assure you that’s highly nuanced, rapidly changing territory.
So, what is it that patients really want?
Patients want clear, easy to understand information. They deserve timely communication with clear expectations about follow-up. Those willing to raise their hands to participate in clinical trials should be told if they qualify for the trial or not, and if not, why. If enrolled, they should be informed of the results of the trial and, if possible, which treatment they received. It really comes down to treating patients with kindness and respect. They shouldn’t feel like they are being ghosted, nor should they have to chase down study coordinators, who are already running a million miles per minute.
As I sit here, almost 48 hours after reaching out about the trial, my desire to participate is waning. Who knows if I’ll actually connect with the study coordinator tomorrow. One thing I know for sure, with 30% of the costs of clinical research attributed to patient recruitment3, a little outsourcing could go a long way and likely reduce a bit of the burden already placed on study coordinators.
Resources:
- Brøgger-Mikkelsen M, Ali Z, Zibert JR, Andersen AD, Thomsen SF. Online Patient Recruitment in Clinical Trials: Systematic Review and Meta-Analysis. J Med Internet Res. 2020 Nov 4;22(11):e22179. doi: 10.2196/22179. PMID: 33146627; PMCID: PMC7673977.
- Huang GD, Bull J, Johnston McKee K, Mahon E, Harper B, Roberts JN; CTTI Recruitment Project Team. Clinical trials recruitment planning: A proposed framework from the Clinical Trials Transformation Initiative. Contemp Clin Trials. 2018 Mar;66:74-79. doi: 10.1016/j.cct.2018.01.003. Epub 2018 Jan 9. PMID: 29330082.
- https://www2.deloitte.com/content/dam/insights/us/articles/22934_intelligent-clinical-trials/DI_Intelligent-clinical-trials.pdf
About The Author:
Leanne Woehlke is a director of life sciences solutions at TransPerfect, where she helps clients create transformational impact with language, technology, and business consulting. Additionally, she is a trainer for Tony Robbins, Professional Certified Coach, and host of the Clinical Research Coach podcast. She has extensive experience in clinical research, starting her career as a CRA then working her way up to director before consulting in patient recruitment, training, and process optimization. Following an entrepreneurial decade, she returned to the corporate world integrating her knowledge of clinical research, patient recruitment, and digital marketing. She is passionate about impacting the industry in meaningful ways and bringing life-changing treatments to patients who need them.