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NEW YORK, New York – July 27, 2021Informa Pharma Intelligence, the global business intelligence provider for the biopharma industry, released its first “Patient Perspectives on Clinical Trial Participation” report, which measured patient attitudes in relation to all stages of the clinical trial process following the onset of the COVID-19 pandemic.

 

The study, conducted online in partnership with Rare Patient Voice LLC, the leading firm connecting patients and caregivers with opportunities to make their voices heard through surveys, interviews, and other studies, reveals how the appetite for engaging with these trials has changed in the past year and identifies what specific factors are driving and preventing initial participation.

“Patient feedback is crucial to improving the clinical trial process, not only so clinical trial sponsors can better the trials themselves, but also so they can eliminate enrollment barriers, maximize resources, and accelerate trial timelines,” said Mike Wenger, Vice President of Patient Engagement at Informa Pharma Intelligence. “Our study found that individuals are generally pleased with their clinical trial experience, but organizers could benefit from working more closely with physicians and being strategic about trial locations to boost enrollment and increase accessibility.”

 

“Considering the patient experience in the design of clinical trials is essential,” said Pam Cusick, Senior Vice President of Rare Patient Voice. “Improving the overall experience by encouraging physicians to share more regularly about clinical trials, making it easier for patients to participate, and providing updates and outcome data will ensure that more patients want to be part of clinical trials in the future.”

 

Physicians Play a Key Role in Enrollment

Even though personal physicians may not be directly involved in ongoing clinical trials, they do drive the majority of patient enrollment. According to the survey, nearly half (48%) of respondents who had participated in a clinical trial found out about the trial through their physician. Even 81% of respondents who had NOT participated in a clinical trial indicated they’d be more likely to participate if they were referred by their physician.

 

Conversely, only 23% of respondents who had participated in clinical trials used ClinicalTrials.gov when searching for trial information, indicating that direct referrals from medical personnel are nearly twice as likely to result in enrollment. While this platform can be a  reliable source of information, it is clear that targeted recommendations from trusted physicians carry more weight when it comes to participation.

 

Location Creates Barriers to Participation

Moving forward, trial sponsors should prioritize location during the planning process to not only make the trial more accessible, but to also maximize enrollment potential and reduce the chance of investing in non-performing sites.

 

Nearly half (47%) of respondents who had not participated in a clinical trial said this was because they were unable to find a nearby trial location which related to their disease or condition, and 67% indicated they would be more likely to participate if they found a suitable study nearby.

 

Patient Experience is Positive, but Communication is Key

Overall, 84% of respondents who had participated in clinical trials described their experience positively, and 86% expressed satisfaction with weekly, bi-weekly, or monthly communication from trial sponsors. However, sponsors should take special care to maintain this level of communication, as 34% of participants receiving communication less often than once a month felt that was insufficient.

 

Additionally, over 60% of respondents had NOT received results of the study they participated in, and 64% believed this to be important. These findings reveal a clear demand for sponsors to continue communicating study developments to participants, even after their portion of the trial has concluded.

 

In addition to frequent communication, a speedy enrollment process also contributed to positive patient feedback. Highly rated trial experiences also have ripple effects: 87% of those who had participated in a clinical trial said they were likely to participate in another, and 84% said they would recommend participation to others. Respondents also expressed altruistic motivations for repeatedly enrolling in clinical trials, with 29% citing a desire to help others and 25% hoping to assist in the search for cures and more effective treatments.

 

For more information about the full study, visit Informa Pharma Intelligence.

 

Research Methodology

Total sample size was 935 respondents ages 15-84. Fieldwork was undertaken in May 2021. The survey was carried out online.

 

About Informa Pharma Intelligence

Informa Pharma Intelligence powers a full suite of analysis products – including Datamonitor Healthcare™, Sitetrove™, Trialtrove™, Pharmaprojects™, Biomedtracker™, Scrip™, Pink Sheet™ and In Vivo™ – to deliver the data needed by the pharmaceutical and biomedical industry to make decisions and create real-world opportunities for growth.

 

With more than 400 analysts keeping their fingers on the pulse of the industry, no key disease, clinical trial, drug approval or R&D project isn’t covered through the breadth and depth of data available to customers. For more information, visit pharmaintelligence.informa.com.

 

About Rare Patient Voice

Rare Patient Voice, LLC provides patients and caregivers an opportunity to voice their opinions through surveys and interviews to improve medical products and services. RPV has over 100,000 patients across 618 different conditions. For more information, visit rarepatientvoice.com.

 

Informa Pharma Intelligence PR Contact

Diffusion PR for Informa Pharma Intelligence

informapharma@diffusionpr.com

(213) 318-4500

 

Rare Patient Voice PR Contact

Laura Mullen

laura.mullen@rarepatientvoice.com

 

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