Harmed patients gaining voice: challenging dominant perspectives in the construction of medical harm and patient safety reforms

Patient safety is a central issue in healthcare. In the United Kingdom, where there is more accurate information on National Health Service (NHS) hospitals than on primary care or the private sector, the evidence on adverse incidents shows that avoidable medical harm is a major concern. This paper looks at the occurrence of medical harm and argues that in the construction of patient safety reforms, it is important to be aware of alternative narratives about issues of power and accountability from harmed patients and self-help groups, that challenge dominant perspectives on the issues. The paper draws upon evidence from two sources. First, the paper draws on experiences of self-help groups set up as a result of medical harm and part of a campaigning network, where evidence was gathered from 14 groups over more than 2 years. In addition, data were obtained from 21 individuals affected by harm that attended a residential workshop called the Break Through Programme; 18 questionnaires were completed from participants and a written narrative account of their experiences and observational data were gathered from a range of workshop sessions. Looking at the issues from harmed patients' perspectives, the research illustrates that a model of medical harm focussing predominantly upon the clinical markers and individual agency associated with a medical model operates to obscure a range of social processes. These social processes, connected to the power and dominance of the medical profession and the activities of a wider state, are seen to be a major part of the construction of harm that impacts upon patients, which is further compounded by its concealment. Understanding the experiences of harmed patients is therefore seen as an important way of generating knowledge about the medical and social processes involved in harm, that can lead to a broader framework for addressing patient safety.