Patients fear being a “guinea pig” or receiving a placebo, healthcare providers do not have time to keep up with all of the clinical trial information or talk with patients in depth, conducting clinical trials is very expensive for healthcare systems, and funding continues to decline for research. With all of these barriers, it is not surprising that only 3% of adult patients with cancer participate in clinical trials.1
In this article, six experts actively involved in clinical trial education, navigation, recruitment, and research provide their perspectives on the barriers and share best practices for overcoming them.
Patient and Family Concerns
Fear was described as the greatest barrier for patients and families, particularly the fear of being a “guinea pig” or receiving a placebo rather than treatment. Patients may not know that clinical trials are an option for them, and if they do know, they may see participation as a last resort. Some also believe that a drug already approved by the FDA would be better than a drug that is not yet approved.
Joyce Schaffer, MSN, RN, AOCNS
Despite new protections that are part of the Affordable Care Act, insured patients may be concerned that there will be unexpected costs that are not covered by their insurance. Some patients have limited insurance plans with minimal out-of-network benefits, and many patients do not know the rights they have within their plans.
Clinical trials also impact the patient’s family. Patients may not want to burden their families and will choose treatment they believe will be easiest for their families, even if it may not be the best for them.
Everyone agreed that communication and education were essential in overcoming the fear-based patient and family barriers to clinical trials. Some specific approaches, mostly focused on healthcare professionals’ involvement, included the following: Provide all the treatment options, including eligible clinical trials, to the patients and their families. Involve them in the decision-making, and engage everyone in the conversation. Recognize that all healthcare professionals have a role in recruitment, including oncologists, nurses, surgeons, social workers, and primary care providers. Educate patients so that they know that clinical trials offer a type of treatment rather than a placebo.
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