The digital transformation of industries like banking, travel, and entertainment is old news, leaving many to ponder why healthcare has not yet been similarly disrupted. While change has been slower to come to medicine, digital technologies have nonetheless already opened up new techniques from gene editing to open electronic health records (EHRs) to patient reviews of doctors on Yelp. Inside of clinical spaces, the practice of medicine is now heavily mediated by screens, and outside, the everyday pursuit of health is heavily mediated by devices of quantification. Under these circumstances, almost any behavior or exposure that can be sensed and digitally quantified becomes reframed as a health behavior available for datafication, intervention, and optimization. This emergent digital health ecosystem produces new concepts of health, disease, risk, privacy, surveillance, and care. It also raises questions about what becomes of the human dimensions of suffering and healing in techno-mediated medical systems that pursue scalable clinical augmentation through artificial intelligence, machine learning, and other computational approaches seeking to convert the nuances of human communication and bodily expression into crunchable datasets.
These conditions produce a field ripe for both humanistic and digital intervention - digital medical humanities. Like the field of critical code studies, this emerging field integrates historical and theoretical frameworks with applied interventions that aim not only to critique, but also to transform their objects of inquiry.
Much work in the medical humanities is premised on the idea that patients’ voices must be better represented to help address structural inequalities that are elided in narrowly biomedical approaches to care. In the era of EHRs, this is both a human problem and a computational problem. While one doctor can listen to one patient at a time, AI can listen to thousands or millions of patients at a time. Though I am skeptical that current Natural Language Processing algorithms are capable of accurately interpreting the subtleties of human communication, I am convinced that significant patterns and revelations could be found if we were capable of “distant reading” the patient narratives buried in healthcare’s big data. It is undoubtedly true that big data analytics need to develop better human contextual sensitivity to produce meaningful results. It is also true that the capacity to interpret personal health data in relation to population-scale data can yield discoveries that benefit patients precisely because they situate the individual in relation to the mass.
It is worth noting that the field of health informatics already uses many of the techniques adopted by digital humanities, such as data visualization, text mining, data mapping, and web scraping. In the present moment, analysis of big health data needs digital humanities methods and especially, critical insights into the values, ethics, and harms that are often embedded in the seemingly neutral operations of binary code. Digital humanists have learned to collaborate with computer scientists to develop new methods for understanding human history, experience, and cultural production. Now, both of these groups should join forces with medical humanists to design techniques for better understanding human experiences of illness through big health data. Part of this project must entail critical examination and intervention into the design of the very devices that millions of Americans cheerfully wear to quantify our own health and wellbeing. As technologies at the forefront of digital health, wearables promise to deliver grand insights about how exposures and behaviors shape health outcomes. As technologies that also surreptitiously engage in digital profiling, wearables compromise our privacy and autonomy, exploiting us through gender-, racial- and income-based manipulations, ultimately threatening to reproduce harmful patterns of health disparities through the privatization of care. There is a clear opening here for critical insights and creative energy from scholars whose digital interventions can help make medicine more humane, socially just, and equitable. What's more, right now the tech companies are actually listening.