Introduction
In the performing arts world, a unique vernacular is used to acknowledge the role of the audience. To face “full front” is to directly address the audience, while “the house” refers to their seating. Between the stage and the seats lies the invisible zone commonly known as “the fourth wall.” Even when including the audience in conversations of stagecraft, there exists this invisible barrier between action and interpretation. This barrier, or fourth wall, is not unique to theater. The fields of both healthcare and research, despite their best efforts, often fail to breach the “fourth wall” that separates treatments from the communities they are designed to serve. The key to crossing this invisible barrier is simple: empathy.
Empathy–the ability to understand another’s feelings– plays a major role in healthcare. Physicians spend years training to be able to care for people. In fact, the dynamic of empathy between care provider and patient defines the very structure of medicine. Patient-centered care emphasizes collaboration, stressing that the provider be an informative and empowering partner in the patient’s health, rather than simply authoritative. This leads to better patient outcomes, greater satisfaction with the care they receive, and enhanced physician well-being. It even saves lives. According to Dr. Gerald Hickinson, a physician and expert on patient safety at Vanderbilt School of Medicine, patient-centered care prevents malpractice and fatal patient outcomes. Clearly, empathy must be a driving force in order for medicine to succeed in its aims.
Similarly, the inclusion of community perspectives in scientific research is vital to its impact. Participant-led research strives to center the needs of affected individuals. In science, the development of a treatment of any kind runs the risk of being formed obliquely by researchers, neglecting those it intends to serve. By centering these communities, inclusivity is improving in both science and healthcare. As a result, practitioners and researchers alike can become better guided by empathy and work to strengthen the integrity of public health as a whole. Two examples, one from medical education and one from research, demonstrate how empathy is innovatively integrated into these fields.
Part I: Medicine
The current medical paradigm falls short in its aims towards empathy due to a lack of patient inclusivity. Patient inclusivity involves providing adequate care to those of all backgrounds, allowing providers to better meet patients’ needs. However, inadequate physician education has prevented this inclusivity. In the medical world, healthcare is changing to address this inequity. The work being done by Lauren Ibarra, a UC San Diego medical student, is one example of how education is intersecting with empathy. Ibarra is using co-design, a collaborative approach to involve all stakeholders, to develop a physician training curriculum that better accommodates Autism Spectrum Disorder (ASD) patients. This curriculum will be implemented as an intervention for physicians who are later in their careers.
Autism spectrum disorder (ASD) is a neurodevelopmental condition that affects how people communicate, learn, and behave. Formally classified as a disorder, ASD is perceived as a daunting diagnosis amongst physicians rather than a different way of thinking. Many providers assume that patients with ASD should adapt their sensory needs to the existing healthcare system, like not dimming lights during check-ups, which can result in greater treatment complications. Sensory accommodations, such as dimming lights, are essential for individuals with ASD to feel comfortable during medical visits. Ibarra’s project addresses these specific needs through using co-design, which actively engages all users–healthcare providers, stakeholders, and ASD patients and their families–in the curriculum design process to ensure their perspectives shape the solution. Physicians provided input through volunteer-based interactions, such as focus groups, discussions, or survey feedback, that assessed understanding of ASD. These methods helped identify physician knowledge gaps or training needs that should be included in the curriculum. Ibarra also works to connect adults with autism to advocacy organizations to include their voices directly in the process. The final curriculum will integrate feedback from healthcare providers and the ASD community, ensuring improved care for ASD patients.
Ibarra’s research has also helped identify gaps and stereotypes in medicine regarding ASD, including the preconception that ASD is a pediatric condition. ASD does not disappear in adults, and they deserve treatment that accommodates them. Ibarra’s guides aim to educate physicians about adapting care for ASD patients, the prevalence of ASD, and improving accommodations. Future plans include connecting with advocacy organizations for adults with ASD, such as Casa de Mosaic, offer physician training days, and develop resources tailored for adults. This practice of co-design can improve healthcare for all patients, fostering inclusivity.
Part II: Scientific Research
Empathy and inclusion hold a footing in scientific research as well. Gene editing technologies have given scientists the ability to craft a world previously beyond the reach of human imagination. However, wielding the power to irrevocably change an organism’s genetic code demands a significant degree of caution. For example, when it comes to malaria, a mosquito-borne disease that has plagued humanity for millennia, gene-editing technology affords us a pen to rewrite history. Geneticists can selectively delete malaria-related genes from mosquitoes and introduce these genetically altered mosquitoes into environments, a process known as a “gene drive.” However, driving a new, malaria-free genotype into the environment means that a community must now bear the risk of ecological changes since a new mosquito could alter delicate inter-species relationships.
Dr. Cinnamon Bloss, a researcher and professor at the Herbert Wertheim School of Public Health and Human Longevity Science at UC San Diego, has been working with scientists across the UC campuses (dubbed “Team California”) to determine how to implement these gene drives against mosquito-borne diseases like malaria. Dr. Bloss and her team conducted focus groups with community members in order to seamlessly incorporate community ecological concerns. Consequently, the project became participant-led as community member input helped design the systems themselves. In the focus groups, the scientists explained the project to community members from counties known to have invasive mosquito species, and then asked what their concerns were. During the interview, questions were asked in both English and Spanish in order to include as many perspectives as possible. By understanding community concerns about gene editing, costs, and efficacy, Team California can structure a gene drive system rooted in empathy for impacted individuals.
Currently, Dr. Bloss aims to further elucidate the role of focus groups in genetic work. Under an NIH grant, she is expanding her investigation of public engagement to a nationwide study, where she is testing the assumption that people are willing to join focus groups for genetic work by sampling over one thousand participants across the U.S. By asking people what circumstances cause them to want to be engaged, she can discover the extent of inclusive science’s power in extending beyond the fourth wall, into an even brighter future.
Conclusion
By centering empathy within healthcare communities, patient-provider relationships will improve as patients feel more valued and respected. With the proper approach, patients are more likely to engage with a care plan and follow medical recommendations catered to their needs. Medicine wields this transformative power in tandem with research. By leveraging public engagement to improve research outcomes, science can fine-tune itself to the needs of humanity. Between physician practices and public engagement in genetics, the modern scientific paradigm is flooded with spotlights, standing center stage. In order to breach the wall and reach the public audience, doctors and researchers alike must act with empathy.
