Facing open data in biomedical and health research entities: guideline to enforce an institutional open data strategy
Creators: name: Martínez Galisteo, Patricia
Publisher: name: Zenodo
Year: 2023

description: Fisabio is a scientific and healthcare entity whose objective is to promote and manage the scientific and biomedical research carried out by 18 Healthcare Departments in Valencia Region (Spain). Provides support research services to more than 1, 500 healthcare professionals. Open data is a fundamental pillar of Open Science. Research data have become the most valuable product in research projects. However, to ensure that they could be “open”, it is necessary to focus on the whole lifecycle of research data (how they are gathered, processed, preserved, shared…) and fulfil with the FAIR principles. In the healthcare context, data are mostly sensitive because research is focused on involving patients, biological samples or due to intellectual property rights. That is why it is important to consider data protection. Besides, main funding agencies at international and national level are requiring Data Management Plans in their projects explaining how data are managed during and after the research. Considering these research challenges, it makes critical to define an Open Data Strategy in Fisabio to be in line with national and international policies as well as taking into consideration the characteristics of data gathered and treated in health research institutions. An internal analysis between July and December 2022 was done to gather information related to current practices of research data management in Fisabio. It included literature review and the elaboration of an <em>ad hoc </em>questionnaire with 35 items divided into two sections related to data research management: practices at individual and institutional level. We received 56 responses. Based on the information received, we organized 3 focus groups with researchers and support managers to gain additional insights. Results highlighted five crosscutting elements: - Lack of incentives and specific resources dedicated to the coordination of data management at Fisabio’s level. - Lack of information related to specific services and processes of data management. - Lack of general knowledge and training actions in open data, FAIR data and data management plans as capacity activities according to Fisabio researchers group’s needs. - Lack of systemic actions and global perspective (at entity level) to ensure a suitable communication in terms of open data. - Resistance to share their research data. Based on the shortcomings identified, several recommendations are proposed to advance in the open data strategy in Fisabio. We are currently working on: - The creation of a Research Data Office including a team of data stewards. - A systematic identification of research data practices (mapping); deepening the work carried out in the previous phase by considering the needs and specific requirements of the researchers according to their type of investigation and the type of data produced. - Based on the mapping activity, an Open Data strategy will be defined and implemented, including specific action lines and a portfolio of services as training programmes for researchers and research support managers. This poster shares the best practices gained to go further in the research data management practices considering FAIR data and open science principles
description: This poster was presented during the 4th Open Science Fair (25-27 September, Madrid, Spain)