Clinical trials have played a pivotal role in medical advancement since the 18th century, and in oncology they offer hope by exploring new treatment options and lifelines. Yet, despite the lifesaving potential of clinical trials, only about 5% of cancer patients participate in them.
As oncology navigators, one of our responsibilities is to empower patients to be educated about all treatment options available to them; this may include conversations about clinical trials. Help your patients become informed, allowing for the consideration of clinical trials as a potential part of their cancer journey. Understanding and addressing patient concerns will be essential to closing the gap between clinical research and patient participation.
Patient empowerment starts with their navigator’s own understanding of clinical trials and the enrollment opportunities available to the patient. Gain invaluable insights into individual trials, the cancer types they target, enrollment criteria, and more by connecting with the clinical trial navigators or research/study coordinators at your facility.
Navigators should also aim to build relationships with the principal investigators (PIs) who lead these clinical studies. Open communication with PIs fosters collaboration and ensures that navigators are up-to-date on trial protocols and any changes to study parameters. This level of familiarity allows navigators to confidently engage with patients, providing accurate and relevant information that helps them engage in treatment conversations and make informed decisions about their care.
By understanding the trial landscape within their institution and forming strong relationships with research teams, navigators can serve as a vital link between patients and cutting-edge treatment opportunities.
Many patients hesitate to consider clinical trials due to persistent myths and misconceptions. These fears stem from a lack of understanding, cultural mistrust, or misinformation.
One common myth is that participants in clinical trials are treated as “guinea pigs.” This perception is far from reality. Clinical trials are carefully regulated with patient safety being at the top of the priority list. Trials undergo rigorous review by institutional review boards, which ensure that the potential benefits of the study outweigh the risks. Furthermore, patients must give informed consent, ensuring they fully understand the trial’s purpose, procedures, and potential risks before enrolling.
Another common misconception is the fear of receiving a placebo instead of treatment, especially in randomized trials where the intervention is unknown. When placebos are used in cancer clinical trials, it is typically alongside standard-of-care treatments. This ensures that all patients receive appropriate medical care while preventing bias in the study’s results.
Additionally, it’s not uncommon for patients to mistakenly believe that all standard or FDA-approved therapies must be exhausted prior to patient enrollment. Many patients are surprised to learn that opportunities to enroll can be as early as before the initial resection/biopsy/debulking surgery. Early engagement in these conversations can ensure patients are aware of all their options.
Despite the potential benefits, enrolling patients in clinical trials remains a significant challenge. One of the primary barriers is the lack of education and awareness among patients. Many do not know that clinical trials are an option or fear that they are a last resort. This is where the role of healthcare providers, especially navigators, becomes critical.
Physicians also face challenges in discussing clinical trials with their patients. Limited time during consultations, lack of familiarity with available trials, or personal biases toward specific treatments can hinder open conversations. However, by building trust and engaging in active, ongoing discussions about clinical trials and treatments, providers can empower patients to explore their options fairly.
Another critical factor is overcoming mistrust, especially among underrepresented populations. Historical injustices in medical research, such as the Tuskegee Syphilis Study, have left a lasting impact. By fostering transparent, respectful dialogues and addressing concerns head-on, healthcare providers can help rebuild trust and encourage more diverse participation in clinical research.
To empower patients to engage in meaningful conversations about clinical trials with their healthcare team, it’s crucial they know what questions to ask. The Table shows some essential questions patients can use to guide these discussions.
Empowering patients to talk about clinical trials is a vital step in offering them a sense of control in their cancer journey. As oncology navigators, we must address the myths, educate patients, and actively engage in conversations about trials. By doing so, we can help more patients explore all available treatment options, contributing not only to their care but also to the advancement of cancer treatment for future patients.
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