Thinking beyond: Ideas you may not have thought of for keeping trialists

While much publicity is given to the difficulty of recruiting viable participants for clinical trials, sometimes the medical world gives less attention to the difficulty of patient retention.

Forte Research recently placed the average dropout rate of all clinical trials at a concerning 30 percent, pointing to factors ranging from scheduling conflicts to fear and anxiety. “Keeping patients on protocols from start to finish can be just as challenging as recruiting enough patients in the first place,” emphasizes Kristina Lopienski in the study. “There are serious consequences … from costly delays to missing data that can compromise the results and integrity of a study. And while some dropouts are due to uncontrollable circumstances, others are preventable.”

Clearly, a key factor in retaining trialists is transparency about study details during enrollment so no one drops out due to unpleasant surprises. Forte found almost double the patients who drop out of studies report unmet expectations, compared to those who finish.

But another report points to “study fatigue” as a major reason for dropouts, noting many tire mentally, physically and/or emotionally of taking daily study medication or returning for follow-ups. That’s a problem that can be partly addressed by regular, personalized engagement that supports trialists and reminds them why they signed up in the first place. In one study, only 47 percent of dropouts said they were able to motivate themselves at any given time to remain in a study, implying trial managers need to work harder to sustain such motivation.

When planning engagement strategy, remember that traditional methods aren’t the only methods. As long as they fall within the boundaries of regulation, there’s nothing wrong with trying out-of-the-box ideas that may help sustain long-term participation.

Given the myriad reasons trialists quit, here are a few suggestions for helping keep them on track — including a few offbeat ones.

  • Know your people. The more info you can gather about your patients, the better you can understand their preferences, motivations and pain points as you form your engagement strategy. Are they participating for emotional, practical, financial, spiritual, altruistic, educational or self-serving reasons? What are the greatest challenges of their conditions? Are they working with caregivers? How can your team help them most during the study? Your first step might be one-on-one interviews through which patients get the opportunity to tell their stories and share vital info that can be shared with your staff.
  • Optimize their preferred venues. How would they like to be contacted? Are they active online, or will you need to call, write or text them? How often do they interact on social media, and might that be an important tool for broadcasting progress reports, sharing news reports about their conditions and announcing events? Your communications will be wasted if patients find them too inconvenient to access.
  • Disseminate info frequently. Trialists clearly wish to be well-informed about their studies throughout each process; Research shows 79 percent view learning about their disease as important, 68 percent prioritize regular updates about the research while enrolled and 71 percent rank post-study results highly. Could you create a newsletter? Make follow-up calls to check for questions? Send texts reporting study progress? Post feature stories about people who may be helped by the research in question?
  • Be more personal, less clinical. Your patients have likely already undergone extreme unpleasantness and could use a little warmth and caring on the part of your team. In fact, 38 percent of dropouts say their site visits have been stressful. Help them see their trial as more than just another unpleasant medical procedure with some personal touches. Out-of-the-box ideas: Greeting cards on their birthdays, free on-site massages, flowers to go or small take-home gifts after treatments.
  • Emphasize teamwork. Your patients need to feel they’re not in the process alone; Forte reports 61 percent place importance in feeling like part of a community during their trial. Foster that feeling through closed social media groups, support groups, trialist and staff profiles in your newsletters, and maybe even social get-togethers.
  • Coordinate access to staffers. The No. 1 reason trialists sign up to participate, according to Forte, is for the chance at high-quality medical care. The No. 2 reason? They’re seeking access to medical professionals. That means they may well lose interest if they feel ignored by the very people they’ve come to see, in which case it behooves your medical team to remain regularly available to questions and concerns. You might stage a group Q and A session with head researchers, stage webinars, encourage patients to call in with questions or simply ask doctors to drop by treatment centers to meet patients.

In short, trial managers are only limited by their imaginations (and a few regulations) when it comes to improving their patient retention rates.

“From start to finish, every single aspect of the patient experience should be outstanding to make your patients feel comfortable and earn their trust,” notes a recent article on “If you can think of any area that your site can improve, do it. Make your site abundantly welcoming to patients.”

BlogLindsey Kuhl