Measuring success scientific, institutional, and cultural effects of patient advocacy

In understanding the role of patients in the transformation of health care and the improvement of health, certainly one of the most pressing tasks is to assess just how effective patients have been when they have banded together.1 The blossoming of patient groups and health movements as political actors has rightly attracted the attention of scholars seeking to understand the significance and consequences of this form of social organization.2 The goals pursued by these groups are increasingly diverse, as are the organizational forms they take and the methods they employ. In this chapter, however, I focus on the question of results: To what extent, and in what ways, do patient groups achieve success? Although it is important not to romanticize patient advocacy or exaggerate the impact of patient groups,3 I argue that it is possible to point to many ways in which such actors have succeeded in bringing about change. I examine the work of a range of patient groups-some very well known, such as breast cancer and AIDS activists, and some relatively unknown-in order to analyze the consequences of their actions and the kinds of changes that they brought about. I look critically at the question of what we actually mean by "success," and I consider both the intended and unintended consequences of patient advocacy. The struggle of patient advocates to succeed is complicated by what I here categorize as problems of representation, expertise, and incorporation and cooptation. Although there can be no blueprint or checklist for success, comparisons across cases reveal patterns that merit consideration by scholars, policy makers, and health advocates alike.