Academic journal article Bulletin of the World Health Organization

Patient Advocacy and Arthritis: Moving Forward

Academic journal article Bulletin of the World Health Organization

Patient Advocacy and Arthritis: Moving Forward

Article excerpt

Introduction

Patient advocacy, which goes hand-in-hand with patient empowerment and patient education, is a fundamental concept within the current movement of health care reform (1). Over the past 20 years, people affected by arthritis have turned to patient advocacy as a means to create awareness and to call for and enact change at the personal, community, government and/or society level in order to improve quality of life. Patient advocacy embraces the concept that people have the right to make their own choices about their health care. It assumes that to be healthy, people must be able to bring about change in their personal behaviours and in the social situations and institutions that influence their lives. In the context of arthritis, personal advocacy is centred on the experiential expertise of the individual affected by the condition, whereas group advocacy is grounded on patient-centred strategies and actions. This paper will discuss the growth of personal advocacy and its impact on patients with arthritis, as well as recent developments in group advocacy and their potential impact on society's treatment of the condition.

Personal advocacy and empowerment

Gadow defined personal advocacy as "participation in valuing the unique meaning which the experience of health, illness or suffering is to have for that individual"(2). It implies that persons should be assisted to exercise authentically their freedom of self-determination, "authentically" meaning a "way of reaching decisions which are truly one's own--decisions that express all that one believes is important about oneself and the world, the entire complexity of one's values" (2). Empowering a patient's experience and perspective are at the heart of personal advocacy.

Empowerment has been broadly defined as an enabling process through which individuals or groups take control over their lives and environment (3). The word "empowerment" builds upon the Latin root posse, from which the words "power" and "freedom" are derived. Empowerment is a concept that emanated from philosopher Paulo Freire (3), who developed a methodology using critical consciousness of literacy to people in Brazil. The Freirian method stresses equality and mutual respect between group members and facilitators who engage the group in problem-solving dialogue.

The empowerment philosophy of patient care is based on several tenets. First, it assumes that patients are responsible for making important and often complex decisions about their medical care. Second, it assumes that because it is patients themselves who experience the consequences of both having and treating their medical condition, they have the right to be the primary decision-makers in this regard. Therefore, according to this philosophy, the primary function of the health professional is to prepare patients to make informed decisions about their own medical

care (4).

Advocacy at the individual level challenges the traditional biomedical model of arthritis care. Box 1 compares the traditional biomedical model of care with a personal advocacy and empowerment model. In the personal advocacy and empowerment model, arthritis patients are seen as experts on their lives and experience with the condition, while health professionals are seen as experts on the medical aspects of arthritis and serve as an information resource.

Personal advocacy therefore enables patients with arthritis to make informed decisions about their disease and to be responsible members of the health care team. To do this, patients must be informed about their condition and their treatment options, and given the opportunity to express their understanding, values and beliefs. They must be given the time and encouragement to ask questions, raise concerns, and express their feelings about what is happening to them.

A critical component of effective personal advocacy is communication between the patient and the health professional. …

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