It’s estimated that more than 8.5 million people in the U.S suffer from Parkinson’s disease (PD), and 1.4 million people in the U.S. suffer from Lewy Body Dementia (LBD). This year I learned that my father-in-law is one of them. We’re doing what most families do in the wake of such an ominous diagnosis: supporting each other, learning as much as we can about the forms of PD/LBD that may be affecting him, and looking for treatment options.
My search for treatment options led me to start investigating clinical trials for promising therapeutics. In doing so, I had the opportunity to experience a change in perspective — from working on the recruitment side of the clinical research industry to taking on the role of a patient advocate, joining the thousands of people who fill this critical role for patients each year.
What I’ve experienced so far can only be described as a frustrating, inefficient, and discouraging process. In this blog, I describe the worst patient recruitment experiences I’ve encountered and offer my insights on how they can be improved.
Let’s start with what should be the first thing offered to prospective patients: a free consultation to see if they qualify for the study.
Long-form Web Surveys Waste Patients’ Time
It takes a great deal of time and effort for patients to find and analyze prospective clinical trials. Unfortunately, some sponsors fail to take this fact into account when they advertise trials and create an unnecessary burden for people who are looking for options. Providing long-form inclusion/exclusion questionnaires on a website is a great example of what I’m talking about.
I ran into this a couple of times while researching trials for my father-in-law. The enrollment questionnaires embedded in the central recruitment sites required extensive patient information to be submitted, and rightfully so. Being in the clinical research recruitment business, I understand why this is done. But it was only after filling out the lengthy forms that I was informed that my father-in-law was ineligible for the trial, and I could not be put in touch with a clinician or research site. This patient experience is terribly frustrating.
A better approach is to empower research sites that specialize in PD/LBD studies to engage with the patient before disqualifying them for a study. At the local site level, a researcher might have three to five PD/LBD studies available, and my father-in-law could have a better chance to qualify for one of them.
Missing Information about Research Sites
The next issue I encountered when searching for clinical trials was a lack of information in ads and marketing material about the research sites that were involved.
Rather than making it clear where potential research sites were located, many of the central campaign advertisements I found provided little or no information about where patients would have to go to participate in the trials. Compounding matters, there was also limited contact information provided, which made it difficult to contact sites to inquire about locations.
The obvious fix here is to list the research sites, or at least their approximate locations, along with contact information for interested parties. Geotargeting applications that display specific content relative to a patient’s location (such as the sites closest to them) can also be helpful, as long as they function correctly. The geotargeting I encountered was ineffective and not at all helpful.
An even better solution would be to take a completely different approach based on increasing research sites’ participation in planning and recruiting for clinical trials. There are many reasons why sites should take a leading role in the recruitment process, but the most obvious one is that the research sites are the only ones who can enroll patients in a trial.
As it is ultimately their responsibility to deliver patients, it only makes sense to put them front-and-center from the beginning of the process. Letting sites take the lead enables them to begin building relationships with patients from the first engagement, rather than being introduced later in the process.
Increased site involvement also benefits patients by increasing the efficiency in the overall recruitment process. Rather than making patients complete multiple, redundant sets of forms for recruitment centers and sites, often without ever receiving responses, patients working directly with sites would be spared at least one layer of bureaucracy.
After this experience, I can definitely confirm that having clear information about the individual research sites’ locations would have been much more useful in our decision-making process. And that a different approach would undoubtedly be beneficial for not only the patients seeking trials, but also the research sites themselves.
Sloppy Web Design and Poor User Experience (UX)
Many of the central patient recruitment websites I visited were not user friendly and lacked the most basic elements of sound web design. Landing pages featured large blocks of unbroken gray text, which was unpleasant to read, and site navigation was typically confusing or inconsistent.
I was surprised at how poor the UX is for these sites, especially given their purpose of recruiting patients who are suffering illnesses that accelerate cognitive decline.
There’s no reason why patient recruitment websites can’t be user friendly and intuitive. Steve Krug’s first law of usability is the golden rule of UX design: Don’t make me think! Web content should be “Self-evident. Obvious. Self-explanatory.” This includes text, graphics, and navigation.
No one wants to scroll through screen after screen of wall-to-wall text describing a clinical trial. In the early investigative phase, patients are looking for just enough detail to understand the research, its potential benefits for them, and the eligibility criteria. Once they’ve read the landing page and become more oriented to the research, it should then be easy for them to drill down and find more details about any particular topic related to the trial.
Considering the resources spent on patient recruitment, investing in user-friendly websites with common-sense navigation should be considered low-hanging fruit.
Patient-centered Recruitment
Most of the recruiting websites I interacted with seemed tone-deaf to their key audience, either rolled out through a cookie-cutter template or designed with little regard for the patients who would be interacting with them. I’m still amazed at how counterproductive it was to interact with these sites. It’s a low bar to set, but at the very least, recruitment websites shouldn’t weed out prospective patients based on their frustration level.
Zooming out on this experience, it’s clear to me that patient-centered recruitment is the only long-term solution — both for patients and for the industry. By putting patients’ needs first in our recruitment campaigns and the assets that are generated for them, we can better serve the patients we rely on while also driving a more efficient and user-friendly process for recruiters and research sites.
We believe in a building patient-centered campaigns that engage and inform prospective patients. Contact us if you would like to learn more about our approach to patient recruitment.