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By Jalal Baig
My patient, Ms. B, was in her 30s when she was diagnosed with early stage breast cancer. (His name was changed in the interest of privacy.) Although this cancer has aggressive characteristics, it seemed to me possible to manage it with fast surgery, chemotherapy and radiation.
But this treatment plan seemed particularly expensive and free for Mrs. B from the beginning. She regularly raised suspicions about her effectiveness and seemed incredulous every time I advised her on her details. This mistrust, I was troubled to know, came from the Internet. She was annoyed by the fact that none of the proposed treatments matched Dr. Google's "medical advice" and his social media news feed. For her, these sources had supplanted our evidence-based guidelines and clinical experience.
She was upset because none of the proposed treatments matched the "medical advice" that she received from her news feed on social networks.
At a time when political misinformation and President Donald Trump's attacks on the free press continue to receive considerable coverage, this is a medical misinformation that, as cardiologist Duke Haider wrote, Warraich in the New York Times last year, "could have an even bigger body" account. And with the false news about cancer now metastasizing on the Internet, the management and prevention of an already ruthless disease is becoming increasingly treacherous.
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Such items would inevitably change the course of Ms. B's cancer. Once the surgery was complete, radiation therapy and chemotherapy were planned to eliminate all remaining cancer cells, both locally and systemically. But she opted against any further treatment, citing stories praising natural therapies – vitamins, juices and extracts – as superior alternatives. It was the path she had chosen, and we had to accept it, despite our obvious reservations.
Nearly a year passed before seeing Ms. B. Imaging showed that a potentially curable condition was now ravaging several vital organs simultaneously. She has unfortunately died because of these complications.
A recent editorial in The Lancet Oncology corrected the gap in trust between the public and the traditional medical community. "At the center of this crisis is a collision between personal autonomy, specious journalism, social media, widespread misinformation and political marginalization, which, together, undermine the value placed on science and human rights efforts. academics, "noted the authors.
In oncology, this conflict manifests itself in many ways. Most often, there is a tension between doctors and patients when the patient self-diagnoses and asks for specific treatments like immunotherapy, regardless of the informed contribution of his oncologist. Even more worrying is the increasing tendency of patients to jump into the troubled waters of alternative and unverified therapies. These often prevail over patients because of undeveloped ideas about the toxicity and inefficiency of chemotherapy or because of a belief system that mistakenly equates "all natural" with "curative".
Two major studies in JAMA Oncology and in the Journal of the National Cancer Institute examined the link between the use of complementary and alternative medicines, the observance of alternative therapies through conventional treatment (surgery, radiotherapy, chemotherapy, and / or or hormone therapy) and overall survival in cancer patients. The studies concluded that patients who use alternative medicines are more likely to reject conventional, clinically proven therapies. More worryingly, those who choose alternative or complementary medicine are twice as likely to die as those who follow traditional treatments.
Those who choose an alternative or complementary medicine are twice as likely to die as those who follow traditional treatments.
This is exacerbated by viral press articles and clickbait on cancer that are misleading and distort misperceptions. A recent article in the Jerusalem Post, for example, was titled "A cure for cancer? Israeli scientists think they have found one. "The film describes a small company called Accelerated Evolution Biotechnology, whose chairman of the board claims to offer" in a year a full cure for cancer ".
It was daring to publish such fantastic claims when society had not yet tested any human beings and had not even published any data from its only study of mice. No impartial expert in oncology was invited to comment on the speculative work of the laboratory. It was also not mentioned that up to 97% of anticancer drugs failed when they were tested on human beings.
Fox News, the New York Post, Forbes, the local TV news, and far right figures such as Glenn Beck and Jacob Wohl have not prevented the shimmering title from making headlines. The truth of the content mattered little on social media, where misinformation spread faster than attempts to retract or correct. As noted in a 2015 study on the content of the New York Times health press articles, this is particularly true for health information that includes "positive feeling" and is "emotionally evocative." .
In addition to articles, medical misconceptions are also widely disseminated by email. Johns Hopkins had to face an email hoax after his name was used to spread false information about cancer. According to the anonymous authors, cancer was attributed to nutritional deficiencies, its presence in all bodies, its spread by surgery and its disease status of the mind, body and mind.
Warraich, Duke's cardiologist, rightly acknowledges the temptation of Google's cancer content. In addition to skeptical patients of varying degrees about science and medical institutions, "the Internet does not need appointments or waiting, it is not in a hurry, it does not judge, it does not require a heavy share and it often provides information that seems simple to understand. "
In addition, a patient's susceptibility to false news about cancer is not due to paranoia. As noted David A. Asch, physician and executive director of the Penn Medicine Center for Innovation in Health Care, "It is instructive to understand why people believe what they do. underlying these thoughts, or results from a search for hope in the face of a dark prognosis. (And this without going into the different financial reasons that can motivate patients to seek a second less expensive opinion.)
The responsibility starts with the scientific community and oncologists, who understand the issues very well here.
Given the troubling prospect of a post-truth era, Silicon Valley and the media must be vigilant. But the responsibility starts with the scientific community and the oncologists, who understand the issues very well here.
Scientists must ensure that new data and conclusions from clinical trials are properly peer-reviewed and accurate in order to discredit misinformation about cancer. They should maintain a strong presence in the news and digital media in order to inform the lay public and patients of the implications of their work and important concepts of research.
While oncologists can refer their patients to resources on how to evaluate health information online or ask questions directly, they must, as Warraich points out, "weave our science with stories" to regain trust. Their greatest asset will forever be able to humanize the cancer experience at the bedside of the patient in order to alleviate the abstract science and misconceptions that accompany it.
Only in this way can we advance in the ongoing cancer information war. At a time when anti-cancer drugs are proliferating and the disease has become much more manageable than ever before in history, we can not lose.
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