Returning from the 63rd ASH Annual Meeting in Atlanta, I couldn't help but ponder the thrashing modern medicine and public health have taken at the hands of a surprising fraction of the global population. There we were in Atlanta, celebrating practice-changing achievements that promise to improve and save the lives of patients with blood disorders, while similar amazing advances — namely mRNA vaccines — were being dismissed elsewhere as unsafe despite evidence to the contrary. At the annual meeting, we listened to presentations with contrasting results for CAR T-cell therapy, and we critically examined the presented data, recognizing differences in study design, patient populations, and so forth, all without disregarding one study or the other as a hoax.
As hematologists, we respect the scientific method and hold public discourse sacrosanct. We have rigorous standards for laboratory studies and clinical trials alike, with the inclusion of appropriate controls and a robust statistical plan. It can be confusing when the public, and especially our patients, choose to dismiss the science in favor of fads, or even dangerous alternatives promoted on social media. Is there something we can do to combat this loss of trust in science?
A recent Gallup poll conducted in the past six months in the United States revealed a growing partisan gap among Americans when it comes to confidence in science — one not explained by educational level (news.gallup.com/poll/352397/democratic-republican-confidence-science-diverges.aspx). ASH members from outside the United States report that this partisan divide is not limited to Americans. Perhaps we as scientists, clinicians, and educators can begin to counter this wave of distrust and disbelief in modern science and medicine, admittedly a very complex problem. Much of the science taught in schools involves factoids rather than the scientific method; our school graduates weren't prepared to critically interpret the flood of (often conflicting) information that has inundated us all since the beginning of the pandemic. Has anyone on network television dedicated a few minutes of airtime to explain and interpret the phase III trials that led to emergency use authorization of the vaccines in terms that are understandable at the eighth-grade level — the reading level required by our IRBs for the language of consent forms? In recent years, ASH has developed an array of resources directed toward educating our patients and the public about blood diseases, including clinical trial basics (www.hematology.org/education/patients). Promoting better communication to lay audiences is key, including enhanced social media strategies to make science understandable. But how much of an impact will it have?
Education must go hand-in-hand with trust in the teacher. I am optimistic that programs such as the ASH Research Collaborative (ASH RC) Sickle Cell Learning Communities, funded by a recently renewed grant, can make a difference. This program, led by a multi-stakeholder group including members of the sickle cell community, links community-based programs and academic medical centers that are working together to improve the care of patients living with sickle cell disease. It educates while building relationships among participants and medical professionals. The ASH RC is also partnering with sickle cell community members to study the effect of COVID-19 vaccines in those with sickle cell disease. Patient representatives and advocates, who are members of our ASH RC sickle cell disease Community Advisory Board, are working closely with researchers to successfully enroll patients in this study. This type of collaboration is a key component for both building trust and overcoming health inequities.
This and initiatives like it are a start. We must put our heads together as a society. We must turn the tide.
