In the cancer arena, COVID-19 information problems highlight the critical role of clear, honest, and effective communication with the public, patients, and their families regarding the increasing complexity of a multitude of topics related to malignant disease and its management.
One only need consider media descriptions of the clinical utility of the 3 FDA-authorized coronavirus disease 2019 (COVID-19) vaccines to understand the concerning status of communicating vitally important health-related information to the public.
Is the Johnson & Johnson product somewhat or substantially less effective, equally effective, or more effective (because it only requires a single administration) compared with the 2 previously authorized mRNA-based vaccines?1 What are the relative values of the 3 vaccines against the multiple—and possibly far more virulent—viral variants? What is the appropriate study end point for determining the benefits of a COVID-19 vaccine: the rate of infection; the percentage of individuals developing mild, moderate, or severe symptoms; or the number of individuals requiring hospitalization or ventilator support, or dying of the infection?
Media commentators with medical degrees (some with questionable additional qualifications) are regularly providing their own interpretations of study results, which may be inconsistent and confusing to the public. And, one must add to this disquieting mix of rhetoric comments such as those from one elected official that feed the perception that the Johnson & Johnson vaccine is not effective enough.2
The angst associated with the ongoing public debate on measures to control and subsequently end the pandemic is further fueled by statements that those who support expert-recommended public health policies are pro-science whereas those who do not are anti-science. A recently published commentary in Science has appropriately highlighted concerns that the issue is less about acceptance of facts and more about relative values.3 As the authors note: “Acceptance of intrusive public health policies, no matter how essential, depends on trust, not merely in ‘the facts’ but also in the institutions that produce and evaluate evidence and weigh trade-offs.” They add: “These disputes signal dissatisfaction with trade-offs that some citizens see as elevating expert values above their own…. American public health discourse too often labels policies as either ‘evidence-based’ or baseless. Decision-makers may find it expedient to shield themselves behind characterizations, but hiding the value choices only inspires resistance and denialism.”
In the cancer arena, the COVID-19 information problems highlight the critical role of clear, honest, and effective communication with the public, patients, and their families regarding the increasing complexity of a multitude of topics related to malignant disease and its management. Unfortunately, space will allow only a brief view of ongoing and growing concerns in this arena.
To begin, we must recognize just how quickly the armamentarium of therapeutic options has increased in very specific areas, how complex and potentially time-consuming discussions of patient choice have become, and how critical it is that we improve our approaches to effective communication. For example, in discussing clinical trial results with patients and their families, is it appropriate to believe that all parties understand the meaning and implications of progression-free vs overall survival? What about the relevance of a partial response vs a complete response, the impact of second-line (or later) therapy on the ultimate survival end point, or the fact that most clinical trials do not represent the remarkably heterogeneous nature of real-world patients?
As noted in the Science commentary, the expression evidence-based, so widely used in oncology to magnify the status of the requirement for specific types of clinical trials (eg, large phase 3 randomized trials), may be of limited relevance in treating individual patients. This situation is eloquently acknowledged in a recent commentary discussing the decision of women with breast cancer to elect to undergo a contralateral prophylactic mastectomy (CPM).4 The authors note: “For an individual patient with unique preferences and values, it may be rational to choose CPM despite the operation’s risks and lack of a survival benefit. From a societal perspective, however, the resources used for CPM could be allocated more effectively elsewhere.”4 Critically, the values of the individual patient may differ from the claims of the evidence and the recommendations of academic experts. Finally, it must be acknowledged that what may be in the best interest of the population regarding the cost effectiveness of care may be inconsistent with what patients decide is in their own best interest.
Aligning patients’ values with broader societal needs requires heightened efforts by the oncology community to provide clear and honest communication that far exceeds the often-employed declaration that high-quality “evidence” provides the answer. Some translate this specifically as phase 3 randomized trial data revealing a statistically significant improvement in overall survival. Unfortunately, in addition to concerns with the real-world relevance of such studies to individual patient care, oncologists are confronted with the rapid acceleration in the amount of often-excellent data that can be considered in cancer management decisions.
Two reports of extensive analyses at the population level of breast cancer risks associated with various genes emphasize the magnitude of this concern.5,6 The findings revealed that a number of genes, in addition to the well-established roles of BRCA1 and BRCA2, increase this risk, some to a rather significant extent but others far more modestly. How should this information be incorporated into patients’ decision-making regarding prophylactic surgery and drug-prevention strategies as well as modifications in recommendations for routine screening?
There are no simple answers to resolve these dilemmas, just as there are no easy solutions to the complex and ongoing COVID-19 public health-related controversies. Hopefully, highlighting the issues involved will stimulate thoughtful discussion and, ultimately, suggestions for more effective approaches to meaningful communications.