"Bad" Literacy, the Internet, and the Limits of Patient Empowerment

The growth of health literacy and patient empowerment movements has resulted in a more active and prominent role for patients as autonomous actors in decisions relating to their health. The Internet has become an important source of information for patients seeking to understand their health conditions and to evaluate possible treatments. However, in making autonomous healthcare decisions, the Internet can be viewed by patients as a decision support system. The Internet is poorly adapted to this task and may lead patients to make hasty, ill-informed, and even dangerous health choices. It is important, therefore, to guide patients to approach the Internet with appropriate skepticism and to temper their perceptions of autonomy. Both patient empowerment and health literacy have been advocated as important to increased patient well-being. Empowerment, viewed as the autonomous involvement of patients in healthcare decisions, has been promoted on at least three grounds. Patient advocates take a normative stance--promoting increased participation by patients in health decision making as a matter of right, arguing for increased personal autonomy through more egalitarian structures and more equitable distribution of power between practitioners and patients (Bhopal and White 1993; Sherwin 1992). Health policy analysts favor patient empowerment as a means for citizens to take responsibility for their healthcare in order to control healthcare costs (Neuhauser 2003). Healthcare professionals have taken an interest in empowering patients to improve health outcomes (Edwards, Davies, and Edwards 2008), but while they often recognize the potential benefits of patient empowerment, they also raise concerns about the ability and motivation of patients to engage appropriately in health decision making so as to realize those benefits. Copyright © 2011, Association for the Advancement of Artificial Intelligence (www.aaai.org). All rights reserved. This concern for ability has been the focus of attention in the study of health literacy. Health literacy focuses on “the degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions.” Most studies of health literacy focus on basic skills including reading comprehension and numeracy, particularly among at-risk populations such as those with limited education, recent immigrants with limited English skills, and the aged whose cognitive as well as physical abilities may be compromised. However, if the goal is greater selfsufficiency, a literate health consumer needs skills beyond these basics. Nutbeam, for example, distinguishes basic or functional literacy from communicative/interactive literacy and critical literacy, which invoke skills that allow the person to derive meaning from available information and to use that information to exercise greater control of and responsibility for his or her health (Nutbeam 2000). These skills might include declarative knowledge, e.g. information about health and medicine, procedural knowledge, i.e. rules guiding reasoned choice about the proper course of action, and finally judgmental skills (Schulz and Nakamoto 2005). In order to participate in the manner envisioned for an expert patient, the person would need judgmental skills relating knowledge to his or her experiences and goals. If the primary goals of empowerment are efficiency and improved outcomes, then literacy (in all its forms) is an essential foundation. “Patients are empowered when they have the knowledge, skills, attitudes, and self-awareness necessary to influence their own behavior and that of others ... to improve the quality of their lives” (Funnell et al. 1991). Consider, for example, successful examples of programs designed to improve health outcomes through patient empowerment relating to chronic diseases like diabetes (Anderson and Funnell 2010). The idea of the “expert patient,” which has emerged recently in UK health policy, describes a patient who is well informed or has access to crucial information regarding his or her own health conditions (Wilson 2001). This information is held 65 AI and Health Communication — Papers from the AAAI 2011 Spring Symposium (SS-11-01)