Between conservation and transformation: considering the role of patient groups in the regulation of health
Faculdade de Economia Universidade de Coimbra Coimbra, Portugal
The literature on patient groups, stemming from a grassroots portrayal of self-help groups as possible alternative systems of care (returning opportunistically with the shadow of impending doom of the welfare state), has known recent attempts at revitalization through frameworks derived from the field of social movements. While that offers valuable conceptual tools to grasp the contextual formation and strategic deployment of patient groups to provide social change to normative and institutional structures which define the management of illness, and illness itself, it may fail at comprehensively addressing the multiple phenomenology of the field as an overarching approach. Granting it such theoretical status may unwittingly coalesce a multiplicity of social forms within the field, which won´t be addressed in its phenomenologically diverse reality and consequence subsumed by the projective banner of a presumably unified emancipatory horizon. Therefore, we propose to take a step back from such theoretical momentum and grasp how, as institutional actors with generally clearly defined and identified constituencies, patient groups are fraught with tensions arising from a potential divide between their transformative possibilities and a perceived need to provide for its particular constituencies. What the return of the political issue of the place of patient groups in health care systems reminds us of precisely is the double bind that curtails any unidirectional conceptualization of their role in the regulation of health: while they may constitute a force of transformation of institutional and cultural frameworks of managing and experiencing illness, their transformative projects are also liable to be systematically caught up in the need to provide for a community of sufferers which commands for conservation strategies for its own, and for its own institutional existence, for instance through systematic strategic (and unholy, social movements-wise) alliances with other regulatory actors. A priori forms of theoretical coalescence of what their potentials for social change may or should be does analytical violence to the effective projection of their action over the regulation of health. Based on an ongoing master´s dissertation, it is an analytical and empirical exploration of the tensions inherent to the regulatory import of patient groups that we propose here.