Cancer. The ominous word instantaneously triggers fear and anxiety. According to the American Cancer Society, cancer is the second most common cause of death in the United States, accounting for one in four deaths. Despite the attention cancer has garnered, an inequality exists. Patients without Internet access may not learn about possible therapeutic interventions. As we proceed with the “Moonshot” to better control cancer, we must assure that all patients reap its benefits.
Up until the late 1980s and early 1990s, the public did not have Internet access, and individuals had to simply trust their oncologists. Now, in the digital age, health information may appear to be pervasively available, but other factors limit access to technology and thus additional resources. In 2001, Lloyd Morrisett, president of the Markle Foundation, coined the term the “digital divide” to describe this widening division in technology accessibility. Individuals of low socioeconomic status do not readily have computer or Internet access. Even those who have Internet access cannot allocate time to investigating their illness while simultaneously working to finance treatment and caring for their families.
Today, patients fortunate to have Internet access and free time to investigate the web can independently uncover medical information online. There is a growing trend towards “medical consumerism,” in which individuals want to be active in making medical decisions. One study evaluating the information seeking behavior of cancer patients found that almost 69 percent of these patients stated they obtain information from at least one source other than their oncologists. The Internet was the most popular additional source. Due to the increased quantity of available information, patients and physicians may have a natural impetus to exert more effort in navigating and exploring all treatment options.
While some patients have access to health information, they may not be able to discern autonomously whether the information is reliable or understand the findings from scientific studies. Patients should not have to be fluent in scientific lexicon. Ideally, patients and doctors would be in constant conversation about the information patients seek. This communication would prevent patients from procuring inaccurate information, acquiring false hope, and pursuing unfeasible treatment options. However, greater information access also translates to patients exerting greater ownership of their treatment.
Patients may experience better outcomes when they participate in medical decision-making or believe they have control over their therapeutic decisions. Kate Beschen, a 39-year-old mother living with leukemia since 2012, was not satisfied with the conventional, linear approach to treatment her oncologist follows nor was she satisfied with the generic informational pamphlets he provided. So, she seeks her own information. She utilizes the Internet to investigate alternative approaches to medicine such as acupuncture, subscribes to leukemia newsletters, and monitors clinical trials.
In her research, she found an article describing a new pill to treat leukemia in lieu of chemotherapy. Kate presented the article to her oncologist who had no previous knowledge of the drug. Had Kate not taken control of her treatment and asserted herself, it is dubious that such a treatment option would have ever been considered. Following her treatment approach, Kate’s white cell count consistently increased by 20,000 every three months. Even though one cannot conclude definitively that her idiosyncratic treatment caused her medical success, her effort cannot be discounted as a likely contributor. The way in which Kate uncovers information to dictate her treatment may be necessary given the absence of patient-specific resources provided by oncologists and the limited, individual time doctors can realistically devote to patients.
Research indicates that invested, information-seeking patients, such as Kate, are more likely to receive better treatment because they feel empowered by asserting agency in their medical care. In a retrospective population-based study of colorectal cancer patients, people who used the media to obtain cancer treatment information were 2.8 times more likely to have heard about new targeted therapy and 3.2 times more likely to have received these treatments, compared to those who did not research their disease. This study indicates that patient inquiry is particularly important regarding new treatment because of variation in physician experience. Physicians who have limited experience with new drugs might not automatically prescribe them but could be encouraged to do so upon patient request. Is it fair that patients may miss out on better treatment opportunities because they are not omniscient medical mavens, monitoring emerging treatment? Simply put: no, it is not. It is not fair that those who are not computer savvy lack resources and consequently may forgo the most up-to-date, effective treatment.
Because procuring sound information is more difficult for those of low income, cancer treatment and community health centers should be proactive in supplying resources. Although doctors are busy, they should keep tabs on new treatments and provide specific pamphlets with this updated, accurate information in their offices for those who lack Internet access. Perhaps, doctors can itemize accessible scientific literature or accurate websites to be perused on office computers.
These methods of information dissemination will maximize educational benefits for all cancer patients, not just for those of certain demographics. Only then can we can facilitate a natural, interactive knowledge exchange between patients and oncologists, culminating in a joint treatment approach in which patients can auto-advocate and feel empowered. We must trust our doctors, but we also must be given the opportunity to trust ourselves. We are our own best advocates.
President Obama signed the Century Cures Act in December 2016 in which $1.8 billion was allocated for cancer research. As the Cancer Moonshot points out, great advances have been made. We are able to significantly extend life expectancy due to extensive and prolonged research endeavors. Cancers that were once considered terminal such as Kate’s leukemia are now treatable. While we may not be able to cure cancer promptly, we must change our current patient treatment system to make treatment more bearable and equitable. If our nation is allegedly working together to overcome cancer, how can we permit socioeconomic disparities to impact medical treatment? The Cancer Moonshot should not occur on class lines.
Rachel Mintz is a biomedical engineering student.
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