Abertura e compartilhamento de dados para pesquisa nas situações de emergência em saúde pública: o caso do vírus zika

Abstract

The objective of this research was to identify and analyze the main issues in discussion about open and shared health research data, particularly in the public health emergency situation of the Zika virus case. It is a research of qualitative nature, with exploratory purpose, using procedures of literature review, documentary research, and interviews with specialists. Contextually, it describes the functioning of the scientific field and the disputes contained therein, opening spaces for the movement of open science, and specifically in the part that deals with the opening of research data. It reflects on the main concepts mobilized in the debate on open and shared research data, relating them to the particularities that involve the health area. Considering elements contained in the dynamics of scientific research in health, it analyzes initiatives and practices developed by international agencies and programs to finance research on political and normative aspects that involve the sharing of research data, as well as editorial policies of scientific journals in the area in question. It analyzes the recent public health emergency related to the Zika virus, mainly from information received from researchers on the issues of access to research data, sharing of produced data, infrastructures and data sharing tools known to them, the perception about the public health emergency declaration and the perception about the sharing and / or opening of data. The results show there are still gaps in concepts, information and research to reduce barriers and resistance on the opening of research data. Most health funding agencies and programs surveyed today have policies for sharing or managing data, which include the need for sharing. This need is also perceived in some health journals, which have instructions for authors about the sharing of data. In the Zika virus case, relates main sources of data for research and the conditions of access to data searched; analyzes the main forms of sharing produced data and situations that required sharing as condition for the relationship; identifies infrastructures and data tools, which resulted in systematization of 14 research data sharing initiatives involving the Zika virus; points out the main changes in traditional sharing, dissemination and publication practices and experiences that have impacted research process; recognizes the contributing factors and those hinder the practice of opening and sharing data in the researchers' perception. It is concluded that sharing data is the practice most used in the researched environments, realizing the need for new practices aimed at opening research data in its broadest sense. At last, concluded that there is a need for new research agenda about data in the health area, reflecting typologies, flows and governance in the research routine especially emergency situations in public health.