The Alliance for Patient Access / IfPA’s Patient Access Policy Blog / Panel Explores Value, Challenges of Clinical Trial Participation

Panel Explores Value, Challenges of Clinical Trial Participation

by Amanda Conschafter, blog editor

Participating in a clinical trial offers patients unprecedented access to investigative treatments – and an unparalleled opportunity to give back to society. But, as a recent Science Series panel highlighted, few patients understand how clinical trials work or when they’re eligible to participate. The clinical research experts and former trial participants on the panel discussed the experience, risks and benefits of trial participation – and considered how to raise public awareness.

Panelists Paul Zimmet and Jamie Troil reflected on their clinical trial experiences, which Troil described as “great.” Troil, whose clinical trial successfully treated her Stage 3 melanoma, noted that she felt “like a partner” throughout the trial.   But both participants had an advantage. Backgrounds in science gave them an informed understanding of what clinical trials are and how they work.

Patients without prior knowledge about clinical research, however, may not encounter the opportunity to participate. Though physicians typically support clinical trial participation, few have time to stay current about trial opportunities – even those that could benefit their patients. Thus, as Troil noted, conversations between patients and physicians about the value of clinical trial participation too often “are not happening.”

Despite the panelists’ positive experiences, they admitted that trials carry certain risks. Perhaps foremost, the patient risks not finding success with the treatment provided by the clinical trial. The potential for side effects also exists.

Time commitment can also present a challenge. As panelists acknowledged, patients with full-time jobs may struggle to make the many appointments required by a clinical trial. Travel to the frequent appointments may likewise discourage elderly patients from participating.

But the ultimate challenge to more robust clinical trials remains public awareness. Panelist Ken Getz of the Center for Information and Study on Clinical Research Participation outlined several initiatives to promote awareness. These efforts, focused largely on educating the next generation of trial participants, include:

  • Highlighting participants’ contributions at school and community functions
  • Instilling the concept of clinical trials into movies and social media
  • Using a rotating museum exhibit to introduce children to the concept of clinical research and the importance of trial participation.

With any luck, these efforts can increase participation, bolster trials and speed to market medications with life-altering potential. For more on raising awareness about clinical trial participation, visit the Coalition for Clinical Trials Awareness.

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