Boosting Clinical Trial Appeal in Patient Communities Part 1: Rare Patient Voice FLASH Webinar Overview

Clinical research is critical to progress towards new treatments and cures for all diseases. However, engaging patients in clinical trial participation is often an uphill battle. In September, Rare Patient Voice surveyed 1989 patients and caregivers in the U.S. about their preferences regarding clinical trials. This 15-minute Flash Webinar, the first in a two-part series, was led by Rare Patient Voice Senior Vice President Pam Cusick, and Grace Charrier, cancer patient advocate and host of Cancer Convos with Grace B. They shared and discussed highlights from the RPV survey results, including what factors may help encourage patient participation in trials.

Two factors that were highlighted as important by patients when considering enrolling in a clinical trial were compensation/support and trial location.

The survey found that 95% of patients surveyed were interested in being compensated for participating in a trial.

Within her own network of patient advocates, Grace shares that compensation factors highly into decision-making. For many, the offer of compensation can be the catalyst that led them to ultimately participate in a trial they were considering. “There are a lot of costs associated with healthcare and many patients who are struggling financially would welcome this assistance,” Grace explains. “For me, compensation is a reward for the risk involved in participation.”

The survey also revealed that 93% of patients would like a point of contact to help arrange travel to research sites.

Although clinical trials can be located at a local hospital, it is not uncommon for studies to be conducted in other cities, states, or even internationally. Navigating travel logistics like airfare, hotels, language barriers, and finding the research site can add complexity for patients. For these reasons, having a guide who can help coordinate these pieces was viewed as important to many patients.

“When joining a clinical trial, the time required to arrange travel to and from the study site is an added burden for patients, especially when already dealing with their own health conditions,” Grace notes. Travel logistics can be considered a barrier to participation if assistance is not on the table. “Ultimately, the patient’s convenience and well-being should be prioritized,” Grace says.

Beyond general compensation for participating, 97% of patients surveyed also said that being reimbursed for meals and travel would appeal to them.

As Pam notes, parking and eating at the hospitals where studies are held can be quite expensive, and for patients spending multiple days on-site to complete a study, this can be a big out-of-pocket expense. For many patients considering participating in a clinical trial, there are often questions regarding the difference between compensation vs. reimbursement and what expenses are covered. Compensation refers to payment to patients based on their participation in a research study. Reimbursement refers to money that is given to the patient to offset their expenses like parking and meals.

“Within my community, I know several patients who have received reimbursement, but I’ve also spoken with others who said that it was not on the table,” Grace shares. “I think the most important part of reimbursement is that prior to participation, what costs will be covered should be reviewed with patients because so many of them do not know.”

The survey also examined preference for on-site vs. decentralized clinical trials. Results showed that 95% of surveyed patients were interested in decentralized clinical trials.

The top reasons for preferring a decentralized clinical trial shared by patients included:

  • Comfort and convenience of remaining at home
  • Patients have children and pets to care for
  • Minimizes disruption of job and daily life schedule
  • Travel can be costly and difficult
  •  Less exposure to others if immunocompromised

Although decentralized trials have been growing in popularity in recent years, there are still patients who prefer on-site clinical trial participation.

The top reasons for preferring an on-site clinical trial shared by patients included:

  • Access to professionals and medical equipment
  • Greater ability to ask questions
  • Less room for patient error
  • Opportunity to get out of the home

“For me, on-site clinical trials offer more human connection,” Grace explains. “I feel more comfortable asking questions, getting feedback, and I know that I’m in a controlled environment with professionals.”

Learn more about clinical trial participation preferences by accessing the webinar recording hereView CISCRP’s library of webinars and podcasts here.

To search for medical conditions in a specific location, visit our Search Clinical Trials page.

To stay informed about clinical trials, visit our Resources page.

Volunteer opportunities with CISCRP, visit our Volunteer page.

To join Rare Patient Voice to take part in research studies, sign up here.

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