Motivation Isn’t Enough: Focus Group Insights to Improve Patient Recruitment and Retention

You’re moving through clinical trials according to timeline when disaster strikes: a patient leaves the study. Then another. And another. Once you enroll a patient, especially a rare disease patient, you need to retain them. With each dropout, your timelines increase substantially. You imagine financing evaporating before your eyes. Why would patients give up an opportunity to advance a potentially more effective treatment? More importantly, how can you convince them to stay?

Scout Clinical partnered with ICON plc (formerly PRA Health Sciences) to better understand why rare disease patients leave clinical trials (and how to keep them on board). We conducted a series of focus groups, and you can review the results in Crossing the Finish Line: Why Effective Participation Support Strategy Is Critical to Trial Efficiency and Success in Rare Diseases.

Participation Is Hard

Our interactions revealed a common sentiment among rare disease patients: participating in clinical trials is hard. The main reason patients gave for leaving clinical trials is the aggregate burden of participation. A combination of small difficulties: they couldn’t be away from home for six months, or they couldn’t afford childcare, a wheelchair-accessible rental vehicle or any number of other non-reimbursed expenses.

Feedback from respondents included:

• 33% never received any travel support or expense reimbursement services
• 71% said that having services offered would have positively affected their ability to complete the trial
• 84% said services were important to their willingness/ability to participate in future trials
• 40% of participants experience some level of financial difficulties

A common theme was a lack of patient support strategies. A key question is: How do we provide support to keep patients enrolled?

Patient Liaisons Make It Easy

Scout Clinical was created to answer this question. We ensure that every patient — anywhere in the world — receives the personalized attention they need. When you work with Scout Clinical, we provide a dedicated team of Patient Liaisons. This team works to address the patients’ needs specifically. We listen, understand, and use tactics that increase retention.

Effective participation support strategies must be personalized and responsive, comprehensive and transparent, and easy to access through a streamlined point of contact.

Small Changes for Big Retention Gains

Reimbursement

Every patient is unique; that’s why we offer flexible payment options. Patients can choose, on a visit-by-visit basis, the form of payment they prefer at no additional cost to the sponsor. Payment options include electronic funds transfer, the ScoutPass reloadable debit card, and check. By making reimbursement easier, we have increased retention rates for our clients.

Travel Logistics and Transport

We reduce travel stress by arranging all of it. We solve problems like obtaining visas, booking flights, coordinating ground transportation, and arranging overnight accommodations. Sometimes just bringing patients and trial staff together is a challenge. That’s when we transport site staff to patients’ homes. Alternatively, we can help arrange long-term housing, including apartment leases, for patients that require extended stays.

Regulatory

Scout provides country-specific ICF addenda and patient-facing documents that are compliant, as well as culturally accepted.

At Scout, no request is too big or too small. We target our services to reduce each of the incremental burdens that patients reported in our recent focus groups, delivering trial support services to help make rare disease trial participation and completion less onerous.

Improve the patient experience and increase retention. Download our focus group insights to find out how to help move your next project across the finish line.