Patient Ergonomics in the Wild: Tailoring Patient Ergonomics Models and Methods to Home and Community Settings

Jenna Marquard

Department of Mechanical and Industrial Engineering University of Massachusetts Amherst

There is no doubt that health-related activities occurring outside of formal healthcare settings have a substantial impact on human health, and there are a growing number of technologies, interventions, and policies aimed at supporting health-related activities occurring outside of formal care settings (Braveman & Gottlieb, 2014; Institute of Medicine, 2014; National Research Council, 2011; Zayas-Caban & Valdez, 2011).

Although this focus is notable and important, these technologies, interventions, and policies must account for the unpaid, health-related work that patients perform and the work systems within which they perform it (Holden et ah, 2013; Valdez et ah, 2015). If human factors and ergonomics (HFE) researchers and practitioners are to improve patients’ health and well-being via new or redesigned technologies, interventions, and policies, they would benefit by taking a patient-centered approach, considering how the entire patient work system impacts varied health-related processes and outcomes. One key patient work system component that should be considered is the context in which the majority of patient work occurs, that is, primarily the home and community settings. Although home and community settings cannot easily be changed by HFE researchers and practitioners, these contexts have a significant impact on other aspects (e.g. tasks and tools) of patient work systems and therefore should be included in any efforts to understand or improve patient work.

The definitions of home and community are diverse, depending on the research and practice fields in which they are used. In the context of this chapter, specific to patient ergonomics, we define home as the physical location where one lives, often as a member of a family or household. Home could include locations such as houses, apartments, prisons, or the streets. We define the community as physical or virtual spaces where inhabitants have shared characteristics. These shared community characteristics could be based on factors such as geography (e.g. “my neighborhood”), role (e.g. “my fellow elementary school teachers”), interest (e.g. “my fitness tracking app competitors”), or some combination of these. These settings are often integral to health-related activities such as medication (Mickelson et ah, 2016) and health information management (HIM) (Zayas-Caban, 2012). Whereas healthcare professionals often enter home and community settings (e.g. home healthcare nurses providing services) and many individuals’ homes are located in formal healthcare settings (e.g. individuals living in a nursing home), this chapter does not address the unique complexities of these intersectional settings.

We consider the end goal of patient ergonomics research and practice to be redesigning patients’ work systems to improve patient work to ultimately improve their health and well-being. We use the term redesigning, rather than designing, to acknowledge that all patients have an existing work system. This chapter will provide an overview of existing research in the following areas as related to home and community settings:

This chapter will then describe practical considerations for conducting patient ergonomics research in home and community settings. Finally, we will present two case studies that describe example approaches for conducting patient ergonomics research. The first case study describes the development and evaluation of a system meant to support individuals with diabetes and hypertension (Marquard et al., 2013; Martinez et ah, 2017). The second case study describes the iterative design of a system to support medication management taken by individuals with or at risk for developing HIV (Marquard et ah. 2018; Stekler et ah, 2018).

Models and Frameworks to Guide Patient Ergonomics in Home and Community Settings

Although formalized patient ergonomics research in home and community settings is relatively new, there are longstanding, related bodies of work in diverse fields—including public health (Ulin et al., 2012; Satcher, 2005), nursing (Anderson & McFarlane, 2019; Andrews & Boyle 2002), anthropology (Kiefer, 2006; Lambert & McKevitt, 2002), psychology (Sarafino & Smith, 2014; Smith, 1996), and consumer product design (Halskov & Hansen, 2015; Ritter et al., 2014). Approaches from these fields, in addition to approaches developed within the ergonomics community, may be used to inform inquiry into and redesign of patient work systems in home and community settings.

Figure 4.1 shows example years in the life of individuals based on the work system models described in the following section. Figure 4.1a shows an example year in the life of a patient interacting with multiple healthcare institutions. For this individual, there is patient-professional work occurring during interactions with the health system and patient work occurring during what is termed “the care-between-the- care”—typically performed in home and community settings (Brennan & Casper, 2015). The nature of patient work during the “the care-between-the-care” is diverse, ranging from recovery from acute episodes to long-term management of chronic conditions. Although less common, some individuals operate entirely outside of any formal healthcare systems, as shown in Figure 4.1b. These individuals may be well and not perceive they need formal care. These individuals alternatively may be ill and choose not to interact with healthcare systems for reasons ranging from perceived self-sufficiency to mistrust in the healthcare system or lack of access to

Example years in the life of individuals

FIGURE 4.1 Example years in the life of individuals.

healthcare services. Holden et al. (2013) describe institutions, home, and community settings as the key environments where healthcare professional and patient works are conducted, so for individuals not interacting with in any formal healthcare systems, the home and community settings are the sole environments in their work systems. Although the individuals illustrated in Figures 4.1a and b both conduct health-related work in home and community settings, the nature of the work between these types of individuals is distinctly different. The individual illustrated in Figure 4.1b has no (or very little) “care-between-the-care,” so the term “patient” may not be an appropriate term to describe this type of individual. The health informatics community has purposefully chosen the term “consumer” when they refer to health informatics interventions focused on laypeople, many of whom are not currently interacting with the formal healthcare system. The important body of research related to “patient work” described in this chapter could certainly be expanded to include all “consumer health work.” Figure 4.1c represents patient work as comprised of three streams of parallel efforts, which includes but are not limited to illness work.

Work System Models

A committee commissioned by the National Research Council (NRC, 2011) published a report detailing the people, tasks, technologies, and environmental factors (i.e. the work system factors) involved in health care that occurs in the home. The NRC report (2011) largely focuses on the type of individual illustrated in Figure 4.1a, specifying three broad categories of people (each with subcategories), namely care recipients, informal caregivers, and formal caregivers. They define categories of tasks related to

(1) health maintenance—promoting general health and well-being, preventing disease or disability; (2) episodic care—optimizing outcomes of health events that pertain to pregnancy, childbirth, and mild or acute illness or injury; (3) chronic care—managing ongoing treatment of chronic disease or impairment; and (4) end-of-life care— addressing physical and psychological dimensions of dying.

For the individual illustrated in Figure 4.1b conducting only heath maintenance tasks, there is no appropriate “people” category within this framework. The NRC report consider technologies to be either medical devices or health information technologies, falling into 12 categories ranging from medication administration equipment to assistive technologies. They describe home environments as having physical, social, community, and policy components. Their detailed delineation of these factors, particularly the environmental factors, can be used as a framework of what must be accounted for when HFE researchers make inquiries into or engage in patient work system redesign efforts in home and community settings.

The SEIPS 2.0 Model delineates the interactions between structural work system elements, work processes, and varied outcomes (Holden et al., 2013). SEIPS 2.0 (Holden et al., 2013) is an extension of the Systems Engineering Initiative for Patient Safety (SEIPS) work system model (Carayon et al., 2006). The need for SEIPS 2.0 arose because of the emergence of “patient work” as a key concept for capturing the important, unpaid health-related work that individuals do (Valdez et al., 2015,2016, 2017). Whereas Carayon et al.’s 2006 SEIPS framework largely addressed paid professional work, SEIPS 2.0 also includes patient work and collaborative professional- patient work (Holden et al., 2013). Within the SEIPS 2.0 framework (Holden et al., 2013), a patient work system includes interactions between six system components: person(s), tasks, tools and technologies, internal environments, organizations, and an external environment. Based on our definition of home being the “physical location where one lives, often as a member of a family or household” and community being the “physical or virtual spaces where inhabitants have shared characteristics,” the home and community contexts align with the SEIPS 2.0 Internal Environment and Organization components. The Internal Environment refers to physical characteristics of spaces within the home and community such as “lighting, noise, vibration, temperature, physical layout and available space, and air quality” (Holden et al., 2013). The Organization component with respect to patient work in the home and community settings includes “communication infrastructure, living arrangements, family roles and responsibilities, work and life schedules, interpersonal relationships, culture, social norms and rules, and financial and health-related resources” (Holden et al., 2013). Similar to the NRC framework, SEIPS 2.0 can be used to inform inquiries into or patient work system redesign efforts in home and community settings.

Corbin and Strauss (1985) describe a model of individuals’ work that overlaps with aspects of the models described earlier and is highly relevant to healthcare- related human factors research conducted in home and community settings. The model focuses on three types of work related to chronic illness management, though the model could be adapted to other types of patient work such as recovery from acute episodes of care. “Illness work,” perhaps the most commonly examined in patient ergonomics research, involves “tasks necessary to manage or treat a chronic illness and its sequelae, including symptoms, disability or loss of function, including but not limited to: regimen work, crisis prevention and handling, symptom management, and diagnostics” (Corbin & Strauss, 1985). “Biographical work” involves “defining and maintaining an identity over the life course” and involves aspects such as “(a) Contextualizing (making the illness part of ongoing life); (b) Coming to terms with the illness, its consequences and one’s own mortality; (c) Restructuring one’s self-concept, and finally; (d) Recasting one’s biography into the future” (Corbin & Strauss, 1985). Finally, “Everyday life work” is defined as “the daily round of tasks that helps keep a household going,” including “externally-focused tasks such as billpaying, shopping, driving, cooking, and cleaning, as well as internal tasks, such as managing stress, anxiety, and emotion” (Corbin & Strauss, 1985). Figure 4.1c shows an example year in the life of one individual, from the perspective of Corbin and Strauss’s model. Strauss et al. (1985) also include the concept of articulation, the work of coordinating within and between these three lines of work. As noted by Valdez et al. (2015), these types of work are so interwoven that any descriptive, design, or evaluation, that is, patient ergonomics research, in home or community settings must attend to all three lines of work.

More recently, Holden and colleagues have developed patient work system frameworks, where patient (and informal caregiver) work performance is shaped by four interacting components: Person(s); Tasks; Tools (or Technologies); and Context

(Holden, Schubert, et al., 2015; Holden et al. 2017). In the earlier publication, Holden, Schubert, et al. (2015) developed a model based on interviews, surveys, and observations of patients with heart failure (n = 30) and their informal caregivers (n = 14). In this framework, the context component is the most closely related to the home and community settings, and includes physical-spatial, social-cultural, and organizational elements. Holden et al. (2017) further synthesized the macroergonomic factors present in patient work within three distinct studies, each focusing on one chronic illness (asthma, heart failure and/or chronic obstructive pulmonary disease, and heart failure). Each of the three studies collected data based on different sociotechnical systems models. They used their analysis to create a consolidated macroergonomic patient work system framework that includes three interacting levels (person(s), tasks, and tools) within three domains (physical context, social context, and organizational context). In their framework, the physical, social, and organizational domains align closely with the home and community contexts. Again, these patient work frameworks can provide insight into the factors that must be accounted for when inquiring into or redesigning patient work systems in the home or community.

One recent study, focused on defining the work of caregivers for persons with dementia, included both a patient work system framework and the Corbin and Strauss (1985) model in their analyses. When Ponnala et al. (2020) conducted a content analysis of transcripts from interviews w'ith 20 caregivers, they developed their coding framework based on the work of Corbin and Strauss and mapped their results to HFE patient work literature (Holden, Schubert, et al., 2015). Their analysis highlights the idea that these frameworks and models can help emphasize different aspects of the patient w'ork system.

Social Determinants of Health and Their Link to Work System Models

The work system models described earlier are based on the idea that patient work systems have diverse characteristics and that this diversity is important to capture and account for in-patient work system redesign. There is a large body of evidence showing the powerful role of “Social Determinants of Health” (SDOH) in shaping health outcomes (Braveman & Gottlieb, 2014). Evidence supporting the impact of SDOH in shaping health outcomes is so compelling that they are a key component of the federal government’s Healthy People 2020 initiative (U.S. Department of Health and Human Services, n.d.), which provides “science-based, 10-year national objectives for improving the health of all Americans.” Although SDOH components are often implicit in varied aspects of the patient work system models described in the previous section, patient work system understanding and redesign efforts could benefit from explicit linkages to SDOH models and framew'orks, particularly because SDOH tend to persist over time. Due to the persistence and intractability of SDOH, patient work system redesign efforts by HFE researchers and practitioners need to account for these enduring factors in addition to trying to change them. For example, there are aspects of several SEIPS 2.0 patient work system components, particularly the person, internal environment, organization, and external environment components that include largely nonmalleable SDOH concepts.

There are several frameworks outlining SDOH factors and their relationships with one another, all of which include some aspects of home and community. Understanding these persistent factors can help determine what aspects of the patient work system are more easily changeable by HFE researchers and practitioners. For example, Dahlgren and Whitehead’s (1991) model—although not explicitly termed SDOH—includes social and community networks and a wide range of living and working conditions that influence health. Kaplan et al. (2000) include social relationships, living conditions, neighborhoods and communities, and institutions (e.g. school, work) in their framework. Ansari et al. (2003) describe a public health model of SDOH that includes community and societal characteristics such as social networks and support structures, social and community participation, and residences (urban, rural, remote). The MacArthur Research Network on Socioeconomic Status and Health includes environmental resources and constraints (e.g. neighborhood factors, social capital, work situation, family environment, social support, discrimination) as important elements in their model (John D. and Catherine T. MacArthur Foundation, 2019).

SDOH models and frameworks, and the applications for them, can therefore provide guidance to HFE researchers and practitioners on what elements should be documented during field research in home or community settings and what should be accounted for in redesign. Understanding SDOH can also help HFE researchers and practitioners identify the disciplines (e.g. sociology, public policy) necessary to more comprehensively understand and redesign patient work systems. Of note, Hall’s cultural iceberg model (1989) can help HFE researchers further understand the complex organizational components of the work system and SDOH models. Hall distinguishes between external, surface elements of culture that can more easily be seen (e.g. food, holidays, language) and internal, deep elements of culture that take more effort to capture (e.g. attitudes toward authority, approaches to decision-making, concepts of time).

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