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The Patient Perspective: Clinical Trials are an Enigma, and They Need Clarity

To ensure the survival of the clinical trial industry, the voice of the patient must be listened to. Patient centricity is a necessity and a regulatory expectation. Consider ICH E8(R1)’s “quality by design” focus. It calls for a comprehensive, stakeholder-inclusive approach to clinical trial design, placing particular emphasis on patient-centricity.

Yet, most sponsor and provider organizations don’t hear the full scope of patient needs. When they seek feedback, it comes from investigators and others with trial experience — not trial-naïve patients and sites.

As a result, sponsors and provider organizations lack a firm grasp on what the average patient wants, needs, or thinks.

To address this knowledge gap, the 2023 Avoca State of the Industry Survey solicited insights from all stakeholders, including patients and sites. The resulting report offers a 360-degree view on motivators and deterrents to clinical trial participation.

Wary and Worried

The survey revealed that 75% of patient respondents had never participated in a clinical trial, and they don’t know anyone who has. Lacking first- or second-hand experience, they are suspicious. Presented with the statement “I believe clinical trials only benefit the pharmaceutical companies that run them,” 36% agreed, 36% disagreed, and 29% were neutral.

Other concerns arose out of a lack of information. For example:

  • 86% had concerns about getting sick or feeling unwell
  • 83% had concerns about the types of procedures required
  • 80% had concerns about the number of procedures required
  • 72% had concerns about time commitment
  • 72% had concerns that compensation wouldn’t be given as expected
  • 70% had concerns that their information/health data would not be private

These concerns directly affect their willingness to participate in a trial:

  • 20% definitely would participate
  • 31% probably would
  • 37% might or might not
  • 4% probably would not
  • 8% definitely would not

It’s crucial to motivate more people to participate in clinical trials.

Motivations to Participate

The reasons someone would participate in a clinical trial vary. The top one, unsurprisingly, is the hope that the treatment would improve their health or medical condition; 89% said this would have some or significant influence. Along those same lines, 84% said the opportunity to learn more about their health or condition could influence them, and 80% cited access to better doctors.

Other influencers include:

  • compensation (88%)
  • the opportunity to contribute to science (83%)
  • curiosity about the product or treatment being researched (82%)

Other responses suggest that trial-naïve patients would warm to a more personalized experience. Asked about which trial benefits might affect their interest in participating, 73% cited the ability to receive all their personal data and results from the clinical trial, and 70% noted the ability to see their regular or preferred doctor for the trial visits.

Other highly ranked incentives:

  • 71% cited provided transportation or travel reimbursement
  • 64% cited the ability to communicate with other trial participants anonymously to discuss the trial experience

Participants Have Another Perspective

People who have participated in a clinical trial had a much more favorable response than those who haven’t. In fact, 90% said that they would definitely or probably participate in a trial again.

In addition,

  • 61% of participants said they didn’t feel sick or unwell
  • 80% said they had a good relationship with the healthcare professionals
  • 85% said that the time spent was worthwhile

Most actual trial participants report a positive experience. This is a stark contrast to the perspective of clinical trials from the general population. Put another way, the perception of clinical trials doesn’t match the reality.

Solving the Enigma

Clinical trials remain an enigma to many people. This points to an urgent need to educate and inform patients and the public about the reality of clinical trials. Moreover, given the responses related to compensation and time commitment, it further suggests that sponsors, providers, and the industry in general need to reduce barriers to participants.

To raise awareness of clinical trial benefits, sponsor and provider organizations need to educate people about trials in the same way they educate them about a newly marketed drug.

One strategy is to enlist community clinicians and trial participants to dispel misconceptions. A regular healthcare provider wields tremendous influence: 79% of patients identified them as one of the most trusted sources for trial information.

Trial participants and former participants can be ambassadors to their friends and family. Of the patients surveyed, 45% said a friend or family member would be among the most trusted sources for information on a clinical trial.

The Patient Has Something to Say

Listening to the voice of the patient is imperative.

Sponsors must develop protocols that meet the needs of research-naïve patients. For example, a patient advisory board can provide first-hand insights on a condition, helping inform protocol design and execution.

To expand the patient pool for clinical research, it is important to embrace patient-centricity and meet a wide array of needs. The future of successful clinical trials lies in the ability to actively listen and respond. Only then can barriers to enrollment, retention, and recruitment be accurately identified and addressed.

Download the full 2023 Avoca State of the Industry Report to learn more. It features high-level findings and implications for sponsors, providers, sites, and patients for a 360-degree view across clinical research stakeholders.

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