Abstract
My Cancer Navigator, the personalised information service of the Anticancer Fund, was established by a team of physicians and scientists to help people with cancer find their way in the overwhelming amount of information on treatment options. It is a free and independent service available to people worldwide, made possible by donations from individuals and businesses.
People with cancer often turn to the internet for help when conventional therapies seem insufficient. Private clinics offering seemingly proven, side-effect-free cures rank high in the search engine results. We regularly receive inquiries about such treatments and clinics from desperate patients and their families worldwide. Many of these clinics market experimental treatments at exorbitant prices and outside the controlled setting of a clinical trial, exploiting hope while presenting misleading information on their attractively designed websites. Through our service, we aim to debunk this misinformation without alienating the patient, striking a delicate balance to maintain their trust while providing evidence-based guidance.
We created a structured response protocol to address patients’ questions about these experimental treatments. Our approach emphasizes compassionate communication, ensuring we acknowledge the emotional distress patients and their families are experiencing. We thoroughly research the clinics and treatments in question, providing objective information about the (lack of) scientific evidence, risks involved, and potential financial exploitation. Most importantly, we leave the door open for patients who decide to pursue these treatments, and continue to support them through their journey without judgment. To help them critically assess the treatment being proposed, we provide a set of questions for them to ask when they interact with clinic representatives. These questions are designed to empower patients to evaluate the scientific validity, potential outcomes, and financial implications of the treatments being offered.
Our intervention has led to better-informed patients who feel heard and supported. Several patients have reconsidered or postponed their decision to pursue unproven therapies at those clinics after receiving our objective information. But we refrain from judgment, and people can continue to rely on us for support regardless of the decision they make on the use of those experimental treatments.
This underscores the importance of trust in patient communication and the need for a nuanced approach to counter misinformation. Our experience shows that simply debunking false information is not enough—remaining empathetic and accessible is crucial to preventing patients from turning to costly alternatives without proven added value and which are potentially harmful. Harm can occur as a direct result of the treatment offered, from declining proven therapies, or from financial hardship.
For other organizations, this case demonstrates the value of an integrated care approach, combining education, support, and ongoing communication. Moving forward, we plan to keep making noise to healthcare providers, people with cancer and policymakers about clinics we discover promoting unproven treatments, while continuing to refine our approach to patient communication.