Low patient retention is one of the greatest challenges that clinical researchers face. One study, conducted by the Tufts Center for the Study of Drug Development, found that between 2012 and 2019, patient dropout rates increased from 15.3% to 19.1%. 

Why do so many people drop out of clinical trials? Industry experts blame several factors, but there’s one that’s often overlooked –– a poor patient experience. Fortunately, there are several things you and your team can do to help enrollees feel respected, cared for, and listened to.

1) Include patients in the trial design process. As a clinical trial designer, it’s easy to get caught up in all the administrative aspects of your research. While getting organized is important, so are the patients. Instead of making them an afterthought, include them in the design process from day one.  

When you’re coming up with the trial concept, invite patients, their loved ones, and other subject-matter experts to share about their lives and the challenges they face. 

Have your patients participate in the trial design process by:

• Asking them about their daily routines
• Inquiring about their access to transportation
• Considering if they have cognitive issues or mobility challenges
• Including their advocates in the discussion (i.e. doctors, family members, and caregivers)

The more you know about your patients’ needs, the easier it is to provide an experience that caters to them.

2) When the trial starts, ask for regular feedback. There’s very little research on the patient experience in clinical trials. (This review, published in BioMed Central may help explain why.) 

Traditionally, trial designers asked for participant feedback only after a trial finished. To provide a better patient experience, consider implementing surveys at different points in time. Applied Clinical Trials says this can help you:

• Identify elements of a trial that might cause someone to drop out
• Identify obstacles that might make compliance difficult
• Make decisions from leading (instead of lagging) indicators
• Identify which point in the study someone is most likely to drop out

There are several ways to conduct patient surveys. You can design and print physical copies and have participants fill them out at each checkup, or you can create a digital version and request feedback through email or a smartphone app.  

3) Make sure the trial site is warm and welcoming. You don’t have control over a trial site’s architecture or lighting, but you can provide a comfortable patient experience. From a personnel standpoint, ensure that everyone who interacts with patients is friendly and approachable. Train your team members so they know how to answer any question a participant might ask. 

If patients have to wait around before meeting with the care team, decorate your waiting room accordingly. Add some color to the walls with artwork or bring the outside in with hanging plants. If you have educational materials, like an infomercial, play it on a TV. 

Most importantly, keep the trial site clean and free of clutter. That includes bathrooms, exam rooms, and any other areas that your patients might encounter.

4) Utilize modern technology. Over the course of the last two years, clinical trials have changed drastically. Several factors, including the COVID-19 pandemic and advances in remote monitoring technology, have made it possible to conduct thorough research beyond the walls of a trial site. 

There is a wide range of digital tools making waves, including remote patient monitors, fitness trackers, and body sensors. These devices collect and record data in real-time, allowing for more accurate documentation and reducing the need for in-person checkups.

5) Have an open door policy. An open door policy typically applies to management, but it can also be helpful for trial facilitators. Clinical research is about helping people. Whenever a new patient enrolls in the study, go out of your way to welcome them. Thank them for their time and explain you’re there to help whenever they need it. By making yourself available and approachable, it’s easier to build trust.

Do you have other tips or suggestions for improving the patient experience in clinical trials? If so, please share your thoughts. To do that, fill out the form below and then click the “submit comment” button.