Sociology of Diagnoses – Exploring Emerging Diseases in Brazil

30 September 2016 - 30 September 2017

PI/s in Exeter: Emeritus Professor Susan Kelly

Research partners: Dr Jacqueline de Souza Gomes (Federal Fluminense University)

Funding awarded: £ 9,985

Sponsor(s): British Academy

About the research

The project will: transfer knowledge of sociology of diagnosis; strengthen the relevant research capacity of Brazilian and British colleagues; and establish collaboration between Brazilian and British researchers. We aim to improve early diagnosis and quality of life for people with rare and emerging diseases, and better understand social costs, impacts and consequences of diagnosis in rare and emerging diseases, especially for patients and families. We will hold a training workshop in the sociology of diagnosis and identify rare disease case studies in the Brazilian context.

We will then conduct:

theoretical analysis of the applicability of the sociology of diagnosis to rare and emerging diseases;
study of Brazilian national health policy/system, focusing on the National Policy of Care for People with Rare Diseases;
study of practices, costs and consequences of diagnosis for the quality of life for people with rare diseases and people affected by the emerging disease Zika.