Abstract
Encouraging patients to play a more active role in their health care is crucial for healthcare planning and for the design of services. This chapter shifts the scholarly focus from practitioners' decision making to that of laypersons' trying to make sense of the lab results available on their EPRs. The authors developed a methodology to capture the relationship between information formats (graph, numeric, or verbal), laypersons' assessment of the conditions' gravity, and their preferred course of action. Focusing on the effect of “not knowing” on laypersons' preferred courses of action, our findings show that formats that left respondents less able to understand the results—namely, the numeric and verbal formats—produced a lower sense of urgency, and correspondingly, less inclination to actively seek professional help. The chapter takes a step toward deriving practical recommendations as to how personal clinical information should be communicated, to improve laypersons' interpretation of the information's significance.
TopBackground
Like many health care systems around the world, Israel’s system is facing enormous and unprecedented financial and capacity pressures, leading to what Koh et al. (2012) called a “cycle of costly ‘crisis care’” (see also Koh, Berwick, Clancy, Baur, Brach, Harris, & Zerhusen, 2012); Simmons, Wolever, Bechard, & Snyderman, 2014; Paz-Fuchs, Mandelkern, & Galnoor, 2018; Baim-Lance, Tietz, Lever, Swart, & Agins, 2019). In response to such challenges, governments are keen to support plans that serve to simultaneously re-organize and coordinate care while engaging the patient in the process of care delivery and self-management of health (Lupton & Maslen, 2019). The implementation of EPR systems is part of what has been called the “digital health ecosystem” – a complex network of digital platforms (including mobile applications, wearable self-tracking devices, medical imaging, genomics, and personalized medicine) designed, in part, to facilitate patients’ participation in the healthcare delivery process (see Iyawa, Herselman, & Botha, 2016). In this context, access to relevant and personalized information is believed to increase laypersons' control over their health and its determinants, and thereby improve their health (Lupton & Maslen, 2019).
Key Terms in this Chapter
Uncertainty: Here uncertainty refers to a person's doubt about the meaning of information. This type of uncertainty means that the person is aware of not knowing how to make sense of the information provided to him.
Underutilization of Health Services: Underutilization of services refers to a state where patients do not receive the full range of necessary services due to inadvertent problems with access to services, under prescription of services, or due to patients' choice to avoid care ( Fetterolf, 1999 ).
E-Health Literacy: E-health literacy is commonly defined as Health as the use of emerging information and communication technology, especially the Internet, to improve or enable health and health care (Eng,, 2001).
Health Information Technology (HIT): Covers the research, design, and application of information technologies in healthcare settings, including the design, development, creation, use and maintenance of information systems to support clinical and administrative processes. In the past two decades, the implementation of HIT in primary and tertiary care settings has revolutionized healthcare policy and care management.
Patients' Engagement in Health Care: Patient engagement refers to the relationship between patients and health care providers as they work together to “promote and support active patient and public involvement in health and healthcare, and to strengthen their influence on healthcare decisions, at both the individual and collective levels ( Coulter & Ellins, 2007 ).
Health Literacy: The World Health Organization defines health literacy as “the cognitive and social skills which determine the motivation and ability of individuals to access, understand, and use information to promote and maintain good health” (World Health Organization, 1998, p.20). Since then, the Institute of Medicine has expanded the definition to include the skills necessary to making “appropriate health decisions” ( Neter and Brainin, 2019 ).
Electronic Patient Records (EPRs): Electronic Patient Records are also referred to as Electronic Medical Records or Electronic Health Records. All refer to a computerized system that systematically collects and electronically stores patient- and population-level health information in a digital format. They are primarily used by health care professionals to perform administrative and clinical functions. Patients are allowed varying levels of online access to their records.
Overutilization of Health Services: Overutilization of services refers to excessive use of medical services. Overutilization related to patient choice is often related to disease conviction - the belief that bodily sensations and changes are due to disease processes. This can motivate maladaptive coping behaviors such as: reassurance seeking, recurrent checking, and information searching ( Asmundson, Abramowitz, Richter, Whedon, 2010 ; Mantwill & Schulz, 2017 ).
Common-Sense Epidemiology: A concept concerned with how laypersons interpret medical information to make sense of the symptoms, causes, course, and consequences of disease. The layperson-as-epidemiologist metaphor implies an agent (layperson) who actively gathers information and interprets it to make sense of his or her health condition. Scholars in the field of e-literacy also look at the personal resources that laypersons mobilize in this process of sense-making.