Duke Medical Ethics Journal
How COVID-19 Has Demonstrated that the Health Humanities and Technology Must Team Up to Improve Healthcare
By: Morgan Biele
A few weeks ago I attended a Zoom Webinar for pre-medical students where I listened to several worried peers ask if the career they are interested in will still exist after their schooling, in fear that these roles will be better executed by artificially intelligent systems. This proves to be a widely-held fear, and an even more widely-held point of interest for debate (Budd, 2019). Despite my curiosity about this possibility as well, I was shocked by its prominence in the dialogue after healthcare workers have been justifiably praised and continually applauded for the past year and a half. COVID-19 has opened alluring doors for the increased integration of big data and artificial intelligence (AI) into healthcare, but COVID-19 also blocked any doors from closing for people in healthcare, because in this case, everyone was a person in healthcare.
By being a person, and therefore also at risk, each healer, hugger, hurter, or host has had to consider what their health and others’ healths mean to them, and this is a dialogue that can propel healthcare forward with both technology and humans still in it. This realizaton of “humanness” remaining pervasive in the consideration of healthcare also necessitates the acknowledgment of the health humanities: to recognize the human condition via “humanities” approaches at an intersection with those approaches that have come to be associated with “health” (Univeristy of Texas Libraries, 2021). By integrating the perspectives of human agency, suffering, and wellbeing derived from philosophy; literature; political theory; gender, race, and disability studies into discourse about the advancements in technology reaching the medical field, healthcare can better prevent and respond to individuals’ and collective needs in crises like that of COVID-19 emerging in the future, while also improving upon health practices after the pandemic is over (Lewis, 2020).
II. Will Technology Replace Humans in Healthcare?
While stances widely vary about the reality of whether human participation in various health roles will become obsolete, the conversations are nevertheless upon us. In the face of COVID-19, one study found that healthcare workers were seven times more likely to have a severe case than a non-essential worker (BMJ, 2020). In addition, some patients reported that those who provided care barely appeared human anyway, wearing extensive personal protective equipment and shielding their humanness, in order to protect that very humanness itself (Guessoum, 2021). In addition to these shortcomings of human-granted care, big data gained a place under the spotlight for symptom monitoring, contact tracing, risk factor identification, and vaccine development (Haleem, 2020). Big data and AI via machine learning have been shown to interpret medical imaging with higher success than radiologists and provide more accurate diagnoses than other specialists too. “Machine learning assisted diagnosis promises to revolutionise healthcare by leveraging abundant patient data to provide precise and personalised diagnoses” and performed in the top 25% in comparison to a cohort of doctors for diagnosing patient vignettes (Richens, 2021).
“Telehealth has been needed to prevent the spread, but is also meeting people where they are, when people are most embedded in the biopsychosocial context of their lives, and allows care providers the ability to enter into their narrative instead of having a patient reduced to what they can share within the four foreign walls of the exam room.”
The majority of doctors, however, believe their jobs aren’t going anywhere, and this belief was corroborated by the pandemic as well. Another study showed that 87% of workers thought their job would largely be safe from automation (Gaskell, 2019). Why such certainty in their job security when machine learning that is only gaining momentum is already doing better at diagnosing than most human counterparts? This gap is where the health humanities lie: in the space that tells us that healthcare is more than just the diagnosis and treatment. Dr. Lewis Mehl-Madrona, who has been integrating an emphasis on narrative into medical practices for decades with attention to indigenous stories and healing, explains: “If we want to avoid the fate of the Dodo bird, then we have to engage in dynamic relationships with patients, we have to put the symptoms in the context of people’s lives.” (Schiffman, 2021) In Health Humanities curriculum that is gaining traction in medical schools throughout the United States, especially since the first degree in Narrative Medicine was conceived at Columbia University by Dr. Rita Charon, students are trained in “sensitive interviewing skills” and “radical listening” amongst other skills and fostering traits that extend care beyond the diagnosis. (Schiffman, 2021). These distinctly human skills create trust between care provider and patient, grant patients larger senses of autonomy and agency, and ensure the services provided to them best align with what they need most, prioritizing health as it is framed by the patient.
III. The Health Humanities During COVID-19
The contact restrictions required to prevent the transmission of COVID-19 increased the demand for a more holistic and extensive care provided by care providers. Dr. Andre Lijoi of York Hospital in Pennsylvania explained, “This pandemic has forced many caregivers to embrace the human stories that are playing out. They have no choice. They become the ‘family’ at the bedside.” (Schiffman, 2021) When everyone is dealing with their health, and all matters feel like matters of health, health care essentially just becomes care, a full, authentic, human, care. As each person reckoned with their mortality, their vulnerability, and perhaps the first sense of precarity where at any moment life can be taken away, care emerged in the comfort of connecting with others who are equally vulnerable and facing that precarity too. This is why people become so indispensable, not for their strengths in knowledge, but their strengths in personhood itself.
Dr. Rita Charon, frequently referred to as the founder of Narrative Medicine studies which explore concepts of medicine through the stories of both patient and provider, explains that humans in healthcare provide a necessary reciprocity that is key to effective healthcare. She describes it as a “mutually influencing ‘system’ of care”, where to be effective, a “highly attentive person, patient or doctor, offers an exposing, magnifying, perhaps truth-telling mirror to the other and receives one in return” (Charon, 2012). She notes that this reciprocal recognition comes from both the patient and provider finding a view of themselves in the other, and this has actually been especially facilitated by the shared experience of the pandemic. From there, she explains that, “They not only will come to know what is the matter with them biologically but will come to wonder what matters to them, what their fears and strengths are,” and in turn for the provider, “The physician sees [their] reflection in the patient's gaze and comes to wonder about what matters for [theirself].” (Charon, 2012) This leads to patients and providers feeling seen, valued, worthy, and deserving of the transaction of care for their immediate health, but also encompassing their overall wellbeing as a facet of their health (Charon, 2012).
The humanities offer both the resources and the skills to drive the feelings of reciprocity and of human understanding-- as COVID-19 progressed, people turned to the humanities as its own form of healthcare. Philosopher Martha Nussbaum states that the humanities grant, “a deeper understanding of love, death, anger, pain,” and “value as we seek to understand our lives.” (Lewis, 2020). She gives nods to the arts, literature, and philosophy in particular, and these saw immense upticks in participation over the past year and a half. Participation on poets.org increased by 30% during quarantine (Verma, 2021). Entire genres gained traction as people turned to “Pandemic Films” in the likes of Contagion, “Pandemic Literature” in Camus’ The Plague and Boccaccio’s The Decameron, and “COVID Poetry” from themes of resilience in Maya Angelou’s “Still I Rise” increasing by over 25% viewership from 2019 to 2020 to contests for children in their schools around the country (Verma, 2021). At Duke, a Pandemic Humanities course was even offered in the fall of 2020, exploring pandemics throughout history via the various frames and approaches of humanities fields.
IV. Bringing Together Technology and the Health Humanities
Despite the comfort that could be gained from shared sentiments in the patient and provider experience, there is still the need to acknowledge however that hospitals have not had enough time or space to account for the needs of so many patients. Consequently, technology in conjunction with humanness appear necessary together. With people restricted to their micro-bubbles and away from traditional forms of healthcare, the health humanities flourished through internet mediums, with platforms like social media, podcasts, and streaming services. Derek McCracken of Columbia University helped create methods for using telehealth to maintain a patient-provider connection that could reflect the values and processes of narrative medicine and the health humanities. He explained, “Telehealth technology can be a bridge,” he said, “because it’s an equalizer, forcing both parties to slow the conversation down, be vulnerable and listen attentively.” (Schiffman, 2021). Telehealth has been needed to prevent the spread, but is also meeting people where they are, when people are most embedded in the biopsychosocial context of their lives, and allows care providers the ability to enter into their narrative instead of having a patient reduced to what they can share within the four foreign walls of the exam room.
Additionally, in order to connect with patients and understand their lives beyond the four walls of the hospital, data can actually be a way to better understand patients’ experiences. The Social Determinants of Health are a group of factors frequently addressed in public health that explore how conditions of living influence health experiences and outcomes, including education and neighborhood (U.S. Department of Health and Human Services). The “All of Us” research program at the National Institutes of Health uexplore how health records in conjunction with social media participation data can access and assess the social determinants of health in order to better predict and intervene in health outcomes (Ostherr, 2020). However, it has been pointed out that this data doesn’t share the narratives but reduces them, turning narrative into numbers, and taking a subjective health experience into the objective. Health Humanities experts have critiqued this fate, and have also been called to inform and educate the developers of these initiatives with their lens as these programs develop (Ostherr, 2020).
In the paper by Ostherr, it is posed, “is it a step too far?” in regards to using natural language processing to bring real, unreduced narrative to technology, but with ethical mediation throughout the process, could it be a step forward, but not too far? One study explored data mining Yelp patient reviews to recognize a greater number of patient experiences in conjunction with the responses in Hospital Consumer Assessment of Healthcare Providers and Systems (HCAHPS) survey, the primary source of feedback from patients in the United States. The study had a Yelp dataset of over 16,000 reviews and identified narratives frequently not given in the HCAHPS survey, because this allowed patients’ voices to be heard in their own lives, their lives beyond the hospital (Ostherr, 2020). In addition, Dohan et al. in 2016 created an “ethnoarray” in 2016 using a hundred narratives from patients with advanced cancer diagnoses to make what they called a “Narrative Heat Map” to understand the tendencies and shared experiences of patients during their cancer experiences (Ostherr, 2020). They found that this data helped people feel like they had experience in common with other patients and survivors, and felt guided by the narrative, as though they could pursue a journey like someone else with similar stances and experiences (Ostherr, 2020). With a larger capacity to store information, might technology be able to collect and hold more experiences to relate with? Is it inconceivable to feel like machine learning could lead to an increased sense of patient understanding? The potential is perhaps there, but not without wariness about the potential dangers of technology too.
V. Health Humanities and Technology Beyond the Examination Room
AI, encompassing machine learning and natural language processing, comes with great fear and a lack of trust concerning privacy and bias. Before putting too much weight on the potential benefits of technology’s immense capacity for holding information, how much information do we want it to have? This data collection can make people’s information less private, less secure, and research has shown that AI has implicit prejudices. As a result, this could come from policy changes or systemic ones, where Ostherr posits that there is a need for intersectional consideration, with representation from disabled people, neurodivergent people, queer people, people along the entire spectrum of gender, and people of color in how their narratives can be represented within AI and what that would mean for them and their experiences. Then from there, they should continue further into examining how “health, illness, intervention, and care are filtered through the lens of AI”, and acknowledge inherent discrimination emerging from its interpretations and biases developed in coding and analyzing (Ostherr, 2020). Although, it has also been found that, regardless of privacy or bias, any technology can further divide health disparities as those who are advantaged acquire greater advantage and those without fall further behind (Timmermans, 2020). With the health humanities having a seat at the technology table, technology could be developed not against equitable, reciprocal, humanized care, but in support of it instead so that disparities are immediately factored in. Because the technology is coming regardless, ethics and implications can be better explored if the technology is looked at through a default lens of holistic humanness.
The Health Humanities could and should continue to pervade the healthcare system in other aspects too. In a paper by Gerard from 2021, it explores how the health humanities need a larger role in healthcare management and administration in addition to the direct relationships between care provider and receiver. The paper reframed management not as a process of of governing people’s experiences but representing them. As a result, they find the health humanities to be a means of reintegrating humanness into the management, a needed skill because, “The actual practice of management is far from standardized, scripted, or even at times professional, but instead often messy and uncertain” and “managers need, in other words, some knowledge of human characters; of human potential and of human foibles” (Hendry, 2006; Gerard, 2021). Patients so often feel reduced within these management systems, reduced to a data point as well, and a health humanities approach to healthcare management restructures management as a process of maintaining a network, not of commanding it.
Finally, just as it has been COVID-19 that has brought attention to these needs and applications of the health humanities, the health humanities will lend needed applications to adjust the underlying societal norms and paradigms to prevent the development of future pandemic-wreaking viruses (Lewis, 2020). Lewis argues that in the Anthropocene Epoch in which we currently live, human practices are setting ourselves up for conditions that put us at risk for the development of future pandemics, via the incubation of zoonotic viruses. Without regard for human life within the broader ecological systems in which we inhabit, authors point out, “The medical literature knew as far back as 2008 that planet-wide socio-economic, environmental, and ecological pressures were creating conditions for Emerging Infectious Diseases (EIDs) arising from novel zoonotic pathogens like COVID-19” (Lewis, 2020). They explain the three factors that are leading to a deterioration fueling these pathogens: resource consumption, over-population, and technology. In response, the authors posit that adopting a framework of the planetary health humanities would counter this deterioration and mitigate future pandemics.
The planetary health humanities will use the health humanities fields to consider health by its holistic view of agency and structures of wellbeing and expand it to the scope of being sustainable at the community and global scales. Shifting to this paradigm of the planetary health humanities means viewing human life biopsychosocially in interaction with the broader world around it. Resources will be framed for the role they play for wellbeing as opposed to development, population will be framed for wellbeing, and technology must shift to a lens for wellbeing too. These factors that are currently putting health at risk and call for the planetary health humanities need not be eliminated, but used with the intent of wellness. Imagining a world where technology is turned away fails to recognize the necessary benefits of technology (a discourse for the benefits for disabled people in particular), so instead that world should center using technology with wellbeing at its core. As a result, technology which isn’t going anywhere, must include the health humanities for another facet of its existence, to ensure that its use is monitored for how it impacts the world at large and to prevent irrevocable deterioration.
COVID-19, in its failures and its triumphs, has at least made the public consider what their individual and collective health means to them, and at most served as a catalyst for modifying the current systems in place in healthcare to improve the quality of care provided and mitigate future risks. In serving these functions, COVID-19 has demonstrated that the health humanities and current technological developments are both key standout players to advance healthcare, despite seemingly in opposition. However, to make feasible and the most impactful progress, the two need to be considered for how they will exist together. This exploration should be further continued by including and prioritizing more underrepresented voices on the role of both the health humanities and technology in healthcare; considering the biopsychosocial impacts of other systems like the political and economic, and expanding its lens to addressing initial access to healthcare, health costs, health literacy, and the disparities by socioeconomic status, race, gender, ability status, and other demographics.
Review Editor: Sara Be
Design Editor: Acelo Worku
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