Introduction

This chapter looks at the principles that radical patient activists want to see guiding healthcare, principles expressed through standards of care. Patient autonomy is a fundamental value for activists and they identify new issues and press for higher standards in directions that support it. Activists work, that is, for standards that are emancipatory, progressively freeing patients from coercion and enlarging their opportunities for self-determination.

Standards

Healthcare is given through a multitude of ways of doing things, practices. Each practice can be given a prescriptive value, that is, made into a standard (Williamson, 1987). So standards are detailed rules about how to do things. Healthcare, consisting of complex series and networks of actions, can be thought of as guided or controlled by standards. Some are explicit, put into words either orally or in written or electronic documents. Some are implicit, guiding staff 's actions, although not put into words. Some are latent, parts of complex actions, not yet singled out as separate actions and given values of their own. Practices or standards that do not exist in words can be as important as those that do: patients’ interests can be repressed through lack of articulated standards (Chapter Two). Individual health professionals usually have a good deal of freedom to carry out their tasks as they wish (Strauss and Glaser, 1997). This enables them to do things that can benefit individual patients and their interests, like adapting what they say or do to each patient and to the situation that they are in. It also allows them to do things that can harm patients or their interests, either by commission or by omission, as the sociologists Anselm Strauss and Barney Glaser pointed out in 1970 (Strauss and Glaser, 1997).

The values attached to standards, explicitly or tacitly, can be taken from any field of knowledge or thought, from the highly technical to the everyday; from scientific research to feelings and intuitions; from academic arguments to beliefs based on personal experience (Williamson, 2000a).