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Message from the Volunteer Advisory Council
Helping to Overcome Barriers to Clinical Trials
Without clinical trials, medical breakthroughs in cancer treatment, including every pancreatic cancer treatment available today, would simply not have been possible. In fact, pancreatic cancer patients who participate in clinical research have better outcomes, so why don’t more patients participate in them?Some obstacles to clinical trial participation are fear of the unknown, lack of control/anxiety about the process, trust issues, and logistical issues. By understanding these obstacles and providing useful and timely information, we can encourage eligible patients to seriously consider trial participation, thus advancing clinical research and making life-saving treatments accessible to the broadest possible population.
Let’s start with the obstacles:
- Fear of the unknown: Participants may worry about being a “guinea pig” in an experimental setting or about the safety, potential risks, and side effects of a therapy that has not yet been fully tested.
- Lack of control/anxiety about the process: Another obstacle is patients’ fear of losing control over their medical treatment. Patients may fear that participating in a trial will complicate their treatment or, worse, compromise their health.
- Trust issues: Some patients may distrust the medical establishment or pharmaceutical industry, particularly if they have heard about negative experiences or unethical practices in the past.
- Logistical issues: Even if a patient is interested in pursuing a trial, they may be dissuaded by the prospect of finding a suitable trial, determining eligibility, and other purely pragmatic concerns.
PanCAN’s Clinical Trial Finder gives patients access to the most comprehensive and up-to-date database of pancreatic cancer clinical trials available in the United States. Since PanCAN recommends clinical trials at diagnosis and during every treatment decision, we should direct anyone newly diagnosed or undergoing treatment to the Clinical Trial Finder and PanCAN Patient Services.
Beyond that, there are a number of things we volunteers can do.
- We can share PanCAN’s stance on clinical trials: that patients with pancreatic cancer who participate in clinical research have better outcomes and that PanCAN strongly recommends clinical trials at diagnosis and during every treatment decision.
- We can encourage people to call PanCAN Patient Services for fact-based information about clinical trials and to find the latest trials that might be right for them. We can educate patients on their rights, including the ability to leave a trial at any time; highlight patient testimonials or success stories of those who have benefited from clinical trials; and partner with healthcare providers to discuss clinical trial opportunities.
- We can utilize social media to post educational content, FAQs, and updates on clinical trials.
- We can leverage community events such as health fairs or fundraising walks to share information.
-Submitted by Sue Popik