Health research and data groups: examples at the forefront of the field

In the medical sector, access to information can transform lives. This is one of the main reasons why data sharing and open data communities or open science linked to medical research have become such a valuable resource. Medical research groups that champion the use and reuse of data are leading this transformation, driving innovation, improving collaboration and accelerating the advancement of science.

As we saw in the case of FISABIO Fundation, the open data in the health sector foster collaboration between researchers, speed up the process of validating study results and, ultimately, help save lives. This trend not only facilitates faster discoveries, but also helps to create more effective solutions. In Spain, the Consejo Superior de Investigación Científica (CSIC) is committed to open data and some renowned hospitals also share their research results while protecting their patients' sensitive data.

In this post, we will explore how research groups and health communities are sharing and reusing data to drive groundbreaking research and showcase more inspiring use cases. From developing new treatments to identifying trends in public health, data is redefining the medical research landscape and opening up new opportunities to improve global health.

Medical research groups committed to working with shared data

In Spain, there are several research groups and communities that share their findings more freely through platforms and databases that facilitate global collaboration and data reuse in the field of health. Below, we highlight some of the most influential cases, demonstrating how access to information can accelerate scientific progress and improve health outcomes.

• H2O - Health Outcomes Observatory clinical data repository

H2O is a strategic public-private partnership to create a robust data infrastructure and governance model to collect and incorporate patient outcomes at scale into health decision-making at the individual and population level. H2O's approach puts patients in ultimate control of their health and ensures that only they exercise that control  and ensures that only they exercise that control. Hospitals from all over the world participate in this consortium, including the Spanish Hospital Universitario Fundación Jiménez Díaz and the Hospital Vall d'Hebron. The Spain Research Unit collects patient-reported health outcomes and other clinical data to build an observatory to improve patient care.

• Carlos III Health Institute: IMPaCT open science research projects

Within the framework of the IMPaCT infrastructure, different projects are being developed and approved as part of the Action in Health's grants for Precision Personalised Medicine Research Projects:

1. COHORTE Programme - Predictive Medicine
2. DATA programme: Data science
3. GENOMICS Programme - Genomic medicine

The information, data, metadata and scientific products generated in IMPaCT are open access, to make science more accessible, efficient, democratic and transparent. Hospitals and research institutes from all over Spain are participating in this project.

• POP Health Data: medical research project of the Instituto de Salud Carlos III (ISCIII) and the Platform of Patients' Organisations (POP)

This is a data project developed collaboratively between ISCIII and POP to improve knowledge and evidence on the clinical, occupational and social reality of chronic patients, and social reality of chronic patients, which is crucial for us. This initiative involves 36 national patient organisations, 16 scientific societies and 3 public administrations, including the Ministry of Social Rights and Agenda 2030, the Carlos III Health Institute and the Spanish Agency for Medicines and Health Products.

• European Cancer Imaging Initiative european project to provide cancer imaging and support cancer research.

One of the objectives of the European Cancer Plan is to maximise the potential of data and digital technologies such as artificial intelligence (AI) or high performance computing (HPC). The cornerstone of the initiative will be a federated European infrastructure for cancer imaging data, developed by the European Federation of Cancer Imaging (EUCAIM). The project starts with 21 clinical centres in 12 countries, including 4 Spanish centres located in Valencia, Barcelona, Seville and Madrid.

• 4CE: Research Consortium

It is an international consortium for the study of the COVID-19 pandemic using electronic health record (EHR) data. The aim of the project - led by the international international academic user group i2b2 - isto inform clinicians, epidemiologists and the general public about COVID-19 patients with data acquired through the healthcare process. The platform offers aggregated data that are available on the project's own website divided between adult and paediatric data. In both cases, the data must be used for academic and research purposes; the project does not allow the use of the data for medical guidance or clinical diagnosis.

In conclusion, the commitment to data sharing and reuse in medical research is proving to be a fundamental catalyst for scientific progress and the improvement of public health. Through initiatives such as H2O, IMPaCT, and the European Cancer Imaging Initiative, we see how accessibility in data management is redefining the way we approach disease research and treatment.

The integration of data analytics practices promises a future where innovation in healthcare is achieved faster, more equitably and efficiently, thus delivering better outcomes for patients globally.