Patient Work Made Visible by the COVID-19 Pandemic

by Elizabeth Lerner Papautsky, Ph.D., University of Illinois at Chicago; Emily S. Patterson, Ph.D., The Ohio State University; and Richard J. Holden, Ph.D., Indiana University

This post is about health and wellness made easier. Patients have always worked to manage their illnesses, while nearly everyone does work for their health. Prior to the pandemic, much of this work was done without being noticed, effectively invisible to others. We believe there are ways to make this work easier, more effective, and more satisfying.

The way to do it is not new: We can borrow tools from other domains—for example, the way pre-flight checklist tools have been used to improve the work of pilots. Tools designed with humans and their work in mind make work easier to do with less cognitive effort. It does not matter if tools are a post-it note, a piece of paper, or an app on a smartphone—as long as it supports people.

The first step in human-centered design is to understand the what, how, why, and where people act, do, and think in conducting this work. Health by design means psychologists, engineers, public health experts, and many others can improve health by changing the systems, large and small, in which humans pursue their health goals.

The scientific field that specializes in designing tools to support complex work is called human factors. Human factors professionals study how people do work in complex real-world environments and design or test human-centered solutions to support this work.

The landmark Institute of Medicine report, "To Err is Human," noted the relevance of the human factors discipline in other safety-critical domains (aviation, military, nuclear power, petrochemicals) and urged the application of human factors approaches in patient safety (Institute of Medicine, 2000). Today, human factors is applied to study and improve the work of healthcare professionals and, increasingly, the work patients and caregivers do to manage their health and wellness. The application of human factors to study and improve the contributions of patients and other nonprofessionals to their own health is called patient ergonomics—or the science (and engineering) of patient work (Holden, Cornet, & Valdez, 2020). Patient work is effortful and goal-directed and can be described in terms of processes and the resulting outcomes.

A few months ago, the U.S. Human Factors and Ergonomics Society (HFES) held a virtual version of its International Healthcare Symposium (HCS) Symposium, a healthcare-focused annual offshoot of the general HFES meeting. For a field that is focused on health and safety, naturally, the COVID-19 pandemic was central to this year’s conference.

With respect to patient ergonomics, we learned that in time of COVID-19…

1. … patient work continues. On a panel entitled The Patient in Patient Safety: Unique Perspectives of Researchers Who Are Also Patients, four researchers in human factors who are also patients described their work navigating their care continuum (Papautsky, Holden, Valdez, Ernst, & Kushniruk, 2020). Topics ranged from infection control, information management, and wound care after surgery, to patient and family engagement to mitigate error. Through their unique, dual-hat perspectives, researcher-patients may better see gaps and opportunities for solutions in supporting patients, families, and communities in health and wellness work. Although the pandemic was not the focus of this panel, emerging insights are critical in informing COVID-19-related solutions.
2. … patient work is disrupted. In times of crisis, access to healthcare is often disrupted. Due to the need to focus resources on patients with COVID-19, as well as on infection control for care providers and communities, many patients experienced care delays at the outset of the pandemic, and subsequently. Human factors scientists are working to characterize these delays through survey studies (Papautsky & Hamlish, 2020). To highlight the devastating impact of almost universal cancellations of elective surgeries in the U.S., we presented a panel entitled, Scheduling Elective Surgeries Post-Pandemic, with panelists representing multiple relevant stakeholders (human factors, surgery, patient, and software development) to show the big picture of this complex problem space (Papautsky, Lustberg, Krok-Schoen, Lee, Park, Attai, & Patterson, 2020; Patterson, Papautsky, Krok-Schoen, Lee, Park, White, Moffatt-Bruce, Chirumamilla, & Lustberg, 2020). Takeaways included the need to inform solutions to help prioritize, plan, and schedule surgical cases in a safe, appropriate, and patient-centered manner during pandemic recovery and across pandemic waves. A compelling insight emerged during this panel, highlighting the key relevance of the patient perspective in seeking and receiving medical care during the pandemic: Specifically, patient factors ranging from life context (e.g. work, childcare, insurance) to mental health, quality of life, pain, and others are all relevant in describing the facilitators and barriers associated with managing delays and rescheduling. Thus, challenges around access to care have impacted and disrupted patient work – in terms of communications with their physician and other roles in the healthcare system (nurses, schedulers, pharmacists, etc.), as well as managing their illness and COVID-19, physically and psychologically, while waiting.
3. … patient work is conducted by all of us. Everyone has health-related work to do during the pandemic, whether new work related to preventing the spread of infection, or old work that becomes more recognizable as such. Examples include preventing the spread of infection by handwashing, wearing masks, and avoiding public places; seeking credible information regarding virus spread, treatment options (or lack thereof), and vaccine development; monitoring for complex COVID-19 symptoms; making judgment calls on when, how, and where to seek medical care; and self-advocating for a COVID-19 test, hospitalization, or a resource (a bed, a nebulizer treatment, a ventilator). Such topics in need of a system perspective to inform human-centered solutions were revealed through presentations from frontline care providers and healthcare-embedded human factors practitioners at HFES HCS, in sharing lived experiences and perspectives. Similar work was highlighted in our researcher-patient panel regarding managing chronic illness and/or acute events. However, it is also representative of the work that has been termed health-promoting behavior or wellness work—or the daily health work outside or beyond disease.

The COVID-19 pandemic has made patient work visible and recognizable. In addition to clinical settings, the pandemic has shone the light on the wellness and healthcare work that occurs in people’s heads, in their homes, at the grocery store, in restaurants, in public gatherings, in the office, in communities, and elsewhere. Thus, an opportunity exists to inform solutions to support patients and caregivers as we navigate pandemic recovery, subsequent pandemic waves, and their aftermath—times of crisis and uncertainty. Further, we have an opportunity to study patient work continued and new, as a function of the pandemic. Human factors science and practice, and patient ergonomics specifically, can help.