Brazilian Patient Organizations and Regenerative Medicine: Selective Comparisons with the Experience of the United Kingdom

Abstract

Patient organizations have become a privileged locus to mediate relations in health care between state and society. This study analyses the roles played in regenerative medicine by Brazilian disease-specific and rare disease patient organizations and draws comparisons with those of the United Kingdom. International public engagement, citizen science, and patient-centered medicine policies are briefly discussed as well as the organizing models of patient associations, the relations of #x2018;biosociality#x2019;, and the construction of alternative#x2018;civicepistemologies#x2019; or tacit forms of knowing. Qualitative analysis is based on documentary information on the sector, secondary data from the organizations#x2019; websites and 18 online interviews with representatives of Brazilian patient organizations. These data show that diseasespecific organizations mainly support patients and contribute to their treatments #x2013; an auxiliary operational model #x2013; and train members to become informed interlocutors #x2013; an emancipatory model. By contrast, most rare disease associations tend to form partnerships with researchers to reformulate treatments and impact public policy.