Guided Health Literacy and Empowerment: The Role of Social Interaction

The goal of this project is to test whether social interaction on an Internet-based interactive health communication application (to be designed as part of the project) for patients with rheumatoid arthritis will enhance patients’ empowerment and health literacy and their impact upon the self-management of the illness. A website designed for this project will provide pa-tients with information and social support. The latter will be withheld from a group of patients in a controlled experiment to assess the impact of social support.The theoretical background incorporates in a model of patient empowerment literacy compo-nents—specifically declarative and procedural knowledge and the judgmental skills to make reasoned choices. Both empowerment and health literacy have been prevalent concepts in health care literature at least since the Ottawa Charter of 1986. Adapted from the management literature, the concept of empowerment has two meanings, “psychological empowerment” refer-ring to employees’ feelings of empowerment (perceived competence to perform tasks well, feeling influential in their work role, feeling that the work is important, and feeling free to choose how to execute tasks), and “role” or “situational empowerment,” referring to the delegation of responsibility and decision-making authority.The theory proposes that health literacy will be critical to effective patient empowerment, i.e., the patient’s ability to participate as an autonomous actor in making healthcare decisions. A psychologically empowered patient lacking adequate knowledge could well make dangerous choices. On the other hand, highly literate patients lacking in psychological empowerment may choose to be highly dependent on health professionals, despite their ability to make well-informed decisions for themselves.Another tradition of research informing this study is the role of social support in health out-comes. This literature suggests that social support in patients’ environment can improve their empowerment and, consequently, also their health outcomes. Therefore we seek to understand how social interaction on a website will lead to increased arthritis literacy, and how it will be associated with empowerment related to arthritis. This then will lead to increased proper activi-ties and exercises as well as to proper medication usage, and consequently also to better health status and improved quality-of-life.This project envisions three studies. Study 1 is focused on the development of a website, in-formed by an empowerment and literacy model. The website will be developed in a bottom-up approach with a small group of patients and few rheumatologists, informed by evidence-based medicine guidelines, and on the other side on patients’ information needs. We will use focus groups with health professionals. The usability of the site will be tested.Study 2 focuses on the impact of the website on patient empowerment and literacy and, conse-quently, on self-management activities (including the use and misuse of medication, rejection of support). It uses health literacy and empowerment measures to investigate their role in patient behaviors related to the self-management of arthritis, proceeding from the assumption that the key variables—most notably health literacy—must be domain-specific. The study is conducted as an experiment, testing a group who receives informative as well as social support features of the site against another who has access only to the informative sections, with a control group receiving neither.Study 3 aims to understand in detail the impact of social interaction via website on patients’ ability and motivation to self-manage their health condition. It will use qualitative methods to see whether patterns of use discovered in earlier research hold in the new case. The patterns discovered earlier are (1) selective use, (2) enthusiastic use, (3) magic use, and (4) “wait-and-see” use.