Data and knowledge infrastructures for scientific research on humans and health in Uruguay: an experience report on a critical constructive design process

Abstract

Data-centrism, precision health, data-science and open science are factors transforming health research, healthcare and health policy. The COVID-19 pandemic interacted with the former and revealed some deficiencies of the latter. This has in turn stimulated disciplinary clashes, interdisciplinary elaborations and political conflicts, concentrated around the techno-scientific, political and societal changes needed to cope with the complex health problems that were and will be challenging our societies (inequity, poverty, pandemics, climate change, reemerging diseases, etc). Herein, as a continuation of an interdisciplinary dialogue initiated in 2018 with the “Data and Information Sciences Applied to Human Health” project (CIDASH for short), we put forward the idea of planning a data-centric, open, health research infrastructure, interoperable with the integral national health system and with national health registries. We aimed to identify and analyze from interdisciplinary and trans-disciplinary perspectives and based on our experiences in Uruguay the opportunities, concerns and challenges regarding the implementation of an open health research infrastructure (OSHRI). Our specific objectives were: i) to provide a brief account of our experience in human health research in Uruguay; ii) to reflect on the perceived opportunities, challenges, issues and potential solutions in human health research from the scientific, methodological, technical, ethical and regulatory point of view; iii) to elaborate on and propose structuring pillars for future open data infrastructures for human health research in Uruguay. The methodology we followed to report our experience was qualitative, interpretative and deliberative. Results include a list of problems and design pillars identified in relation of the creation of an OSHRI. To discuss these results we took the Centre for the Integration of Health Data and Knowledge (CIDACS) in Salvador de Bahía (Brazil) as an example of an installed and running open science health research infrastructure that warrants access to population-size data with proper ethical and scientific standards. After deliberation on the above-mentioned experiences we found that this report could bring us a step closer in the way of engaging with participatory research and change from within the science community.