datos de salud

Data is the engine of innovation, and its transformative potential is reflected in all areas, especially in health. From faster diagnoses to personalized treatments to more effective public policies, the intelligent use of health information has the power to change lives in profound and meaningful ways.

But, for this data to unfold its full value and become a real force for progress, it is essential that it "speaks the same language". That is, they must be well organized, easy to find, and can be shared securely and consistently across systems, countries, and practitioners.

This is where HealthDCAT-AP comes into play, a new European specification  that, although it sounds technical, has a lot to do with our well-being as citizens. HealthDCAT-AP is designed to describe health data—from aggregated statistics to anonymized clinical records—in a homogeneous, clear, and reusable way, through metadata. In short, it does not act on the clinical data itself, but rather makes it easier for them to be located and better understood thanks to a standardized description.HealthDCAT-AP is exclusively concerned with metadata, i.e., how datasets are described and organized in catalogs, unlike HL7, FHIR, and DICOM, which structure the exchange of clinical information and images. CDA, which describes the architecture of documents; and SNOMED CT, LOINC, and ICD-10, which standardize the semantics of diagnoses, procedures, and observations to ensure that data have the same meaning in any context.

This article explores how HealthDCAT-AP, in the context of the European Health Data Space (EHDS) and the National Health Data Space (ENDS), brings value primarily to those who reuse data—such as researchers, innovators, or policymakers—and ultimately benefits citizens through the advances they generate.

What is HealthDCAT-AP and how does it relate to DCAT-AP?

Imagine a huge library full of health books, but without any system to organize them. Searching for specific information would be a chaotic task. Something similar happens with health data: if it is not well described, locating and reusing it is practically impossible.

HealthDCAT-AP was born to solve this challenge. It is a European technical specification that allows for a clear and uniform description of health datasets within data catalogues, making it easier to search, access, understand and reuse them. In other words, it makes the description of health data speak the same language across Europe, which is key to improving health care, research and policy.

This technical specification is based on DCAT-AP, the general specification used to describe catalogues of public sector datasets in Europe. While DCAT-AP provides a common structure for all types of data, HealthDCAT-AP is your  specialized health extension, adapting and extending that model to cover the particularities of clinical, epidemiological, or biomedical data.

HealthDCAT-AP was developed within the framework of the European EHDS2 (European Health Data Space 2) pilot project  and continues to evolve thanks to the support of projects such as HealthData@EU Pilot, which are working on the deployment of the future European health data infrastructure. The specification is under active development and its most recent version, along with documentation and examples, can be publicly consulted in its official GitHub repository.

HealthDCAT-AP is also designed to apply the FAIR principles: that data is Findable, Accessible, Interoperable and Reusable. This means that although health data may be complex or sensitive, its description (metadata) is clear, standardized, and useful. Any professional or institution – whether in Spain or in another European country – can know what data exists, how to access it and under what conditions. This fosters trust, transparency, and responsible use of health data. HealthDCAT-AP is also a cornerstone of EHDS and therefore ENDS. Its adoption will allow hospitals, research centres or administrations to share information consistently and securely across Europe. Thus, collaboration between countries is promoted and the value of data is maximized for the benefit of all citizens.

To facilitate its use and adoption,  from Europe, under the initiatives mentioned above, tools such as the  HealthDCAT-AP editor and validator have been created, which allow any organization to generate descriptions of datasets through metadata that are compatible without the need for advanced technical knowledge. This removes barriers and encourages more entities to participate in this networked health data ecosystem.

How does HealthDCAT-AP contribute to the public value of health data?

Although HealthDCAT-AP is a technical specification focused on the description of health datasets, its adoption has practical implications that go beyond the technological realm. By offering a common and structured way of documenting what data exists, how it can be used and under what conditions,  it helps different actors – from hospitals and administrations to research centres or startups – to better access, combine and reuse the available information, enabling the so-called secondary use of the same, beyond its primary healthcare use.

• Faster diagnoses and personalized treatments: When data is well-organized and accessible to those who need it, advances in medical research accelerate. This makes it possible to develop artificial intelligence tools that detect diseases earlier, identify patterns in large populations and adapt treatments to the profile of each patient. It is the basis of personalized medicine, which improves results and reduces risks.
• Better access to knowledge about what data exists: HealthDCAT-AP makes it easier for researchers, healthcare managers or authorities to locate useful datasets, thanks to its standardized description. This can facilitate, for example, the analysis of health inequalities or resource planning in crisis situations.
• Greater transparency and traceability: The use of metadata allows us to know who is responsible for each set of data, for what purpose it can be used and under what conditions. This strengthens trust in the data reuse ecosystem.
• More efficient healthcare services: Standardizing metadata improves information flows between sites, regions, and systems. This reduces bureaucracy, avoids duplication, optimizes the use of resources, and frees up time and money that can be reinvested in improving direct patient care.
• More innovation and new solutions for the citizen: by facilitating access to larger datasets, HealthDCAT-AP promotes the development of new patient-centric digital tools: self-care apps, remote monitoring systems, service comparators, etc. Many of these solutions are born outside the health system – in universities, startups or associations – but directly benefit citizens.
• A connected Europe around health: By sharing a common way of describing data, HealthDCAT-AP makes it possible for a dataset created in Spain to be understood and used in Germany or Finland, and vice versa. This promotes international collaboration, strengthens European cohesion and ensures that citizens benefit from scientific advances regardless of their country.

And what role does Spain play in all this?

Spain is not only aligned with the future of health data in Europe: it is actively participating in its construction. Thanks to a solid legal foundation, a largely digitized healthcare system, accumulated experience in the secure sharing of health information within the Spanish National Health System (SNS), and a long history of open data—through initiatives such as datos.gob.es—our country is in a privileged position to contribute to and benefit from the European Health Data Space (EHDS).

Over the years, Spain has developed legal frameworks and technical capacities that anticipate many of the requirements of the EHDS Regulation. The widespread digitalization of healthcare and the experience in using data in a secure and responsible way allow us to move towards an interoperable, ethical and common good-oriented model.

In this context, the National Health Data Space project represents a decisive step forward. This initiative aims to become the national reference platform for the analysis and exploitation of health data for secondary use, conceived as a catalyst for research and innovation in health, a benchmark in the application of disruptive solutions, and a gateway to different data sources. All of this is carried out under strict conditions of anonymization, security, transparency, and protection of rights, ensuring that the data is only used for legitimate purposes and in full compliance with current regulations.

Spain's familiarity with standards such as DCAT-AP facilitates the deployment of HealthDCAT-AP. Platforms such as datos.gob.es, which already act as a reference point for the publication of open data, will be key in its deployment and dissemination.

Conclusions

HealthDCAT-AP may sound technical, but it is actually a specification that can have an impact on our daily lives. By helping to better describe health data, it makes it easier for that information to be used in a useful, safe, and responsible manner.

This specification allows the description of data sets to speak the same language across Europe. This makes it easier to find, share with the right people, and reuse for purposes that benefit us all: faster diagnoses, more personalized treatments, better public health decisions, and new digital tools that improve our quality of life.

Spain, thanks to its experience in open data and its digitized healthcare system, is actively participating in this transformation through a joint effort between professionals, institutions, companies, researchers, etc., and also citizens. Because when data is understood and managed well, it can make a difference. It can save time, resources, and even lives.

HealthDCAT-AP is not just a technical specification: it is a step forward towards more connected, transparent, and people-centered healthcare. A specification designed to maximize the secondary use of health information, so that all of us as citizens can benefit from it.

Content created by Dr. Fernando Gualo, Professor at UCLM and Government and Data Quality Consultant. The content and views expressed in this publication are the sole responsibility of the author.

Data on older people can play a crucial role in promoting healthy ageing, assisting the development and maintenance of the physical and mental capacities that enable well-being in old age. This open data can be used for the development of policies to better respond to the needs of older people, such as the promotion of home care services or the creation of more accessible and safer urban spaces. They can also be used by researchers to analyse patterns and trends in your health, or by companies and developers devising solutions to improve your quality of life.  Also, such open data enables older people and their families to access relevant information about their health and well-being, empowering them to make informed choices and actively participate in their care. And these are just a few examples of possible uses!

In this article, we are going to explain two projects, linked to the Barcelona Open Data Initiative, which seek to promote the provision of data on the elderly to the public, with the aim of promoting its reuse and achieving benefits such as those mentioned above.

Ranking 50 datasets on healthy ageing

A few months ago, the Barcelona Open Data Initiative, with the support of the Diputació de Barcelona, launched a call through their social networks to identify the fifty best datasets on wellbeing and healthy ageing of older people. Through this collaborative action, to which various users have contributed, a ranking has been drawn up and is now available.

Here are some examples of datasets and the thematic categories to which they belong. All of them are suitable for re-use and offer information of great social value.

• Data related to public support, such as public support for elderly care or home help services..
• Data on services and resources available, such as services for dependent persons (day centre for older people and residence for older people), the inclusive community action resources or the active ageing workshops..
• Data related to aspects about their social situation , such as active older people, loneliness in older people or the gender digital divide.
• Data related to survey and statistics, such as the survey of users of the Telecare Service, lthe statistics on social services for the elderly or the ageing evolution of the population over 65 years of age from 2024-1975.
• Data from studies on the subject, such as the study on the accessibility of public buildings or the study on the satisfaction of users of the Meals on Wheels service..

These are just a few examples, but you can consult the complete list on the website of Iniciativa Open Data Barcelona.

 Open Data Barcelona Initiative has also created in previous years compilations of materials and rankings of datasets on other topics of social interest, such as climate change or municipalities with friendly public spaces..

Data Observatory x Seniors

Barcelona Open Data Initiative and the Democratic Union of Pensioners and Retirees of Spain, with support from the Ministry of Social Rights, Consumption and Agenda 2030, also presented a few months ago the first Data website of the Data Observatory x Seniors. Its aim is to facilitate the analysis of healthy ageing in Spain, strategic decision-making and public intervention in rural and urban environments, in order to promote the autonomy, dignity and adaptability of older people.

At the moment, you can find it on this website:

• A database where data sets from various sources, such as the National Statistics Institute (INE) or the Ministry of the Interior, arecollected.
• A space where data is displayed in a simple way through interactive graphics, aimed at both private citizens interested in the subject and professionals who want to plan, organise or propose some kind of related service. The visualisations focus on the intervention of older people in the world of associations, segmented by urban and rural municipalities, as well as their involvement in other forms of participation and leisure activities that promote social interaction and well-being in general.

The idea is that the portal will also include training tools and options.

These two projects highlight examples of categories of data and tools that can be made available to citizens in order to understand how older people live and act, with the aim of improving their quality of life. A goal to which we must all contribute, as highlighted by the World Health Organisation with its Decade of Healthy Ageing (2021-2030) initiative. In the face of demographic change and the ageing of the population that we are experiencing, it is necessary to join forces to ensure that we can all enjoy an old age with the maximum possible well-being.

15 personalities from the field of innovation, data and health will be in charge of evaluating the proposals received at the IV edition of the Aporta Challenge, the competition that seeks to reward ideas and prototypes that promote improvements in a specific sector -in this case health and well-being- through the use of open data.

The names of the members of the jury have become known through a resolution published in the Red.es electronic headquarters. Among them we find representatives of the Public Administrations, organizations linked to the digital economy and the field of the university and data communities. Do you want to know who they are?

Organizations linked to digital advancement

The jury includes a series of representatives of public organizations at the national and regional level focused on the digitization and digital transformation of our country.

- Alberto Palomo Lozano, Chief Data Officer of the Data Office, dependent on the Secretary of State for Digitalization and Artificial Intelligence of the Ministry of Economic Affairs and Digital Transformation (MINECO). Among its functions is the promotion of the sharing, management and use of data throughout all productive sectors.

- Miguel Valle del Olmo, Deputy Director General of Artificial Intelligence and Digital Enabling Technologies f the Secretary of State for Digitalisation and Artificial Intelligence (MINECO), in charge of the design and implementation of the National Artificial Intelligence Strategy of Spain.

- Santiago Graña Dominguez, Deputy Director General of Planning and Governance of the Digital Administration of MINECO. Its aboutbody in charge of promoting the process of rationalization of information and communication technologies in the scope of the General Administration of the State and its Public Bodies.

- Francisco Javier García Vieira, Director of Digital Public Services of Red.es, a public entity promoter of the Digital Agenda in Spain. The Public service area works in three areas: in education, with Educa en Digital and the Educational Posts at Home; in health, with chronicity projects in Andalusia and Extremadura and with a whole range of local and provincial developments through the Smart Territories.

- María Fernández Rancaño, Deputy Director of Digital Public Services of Red.es, unit in charge of the deployment of technological implementation programs in public services of the Administration.

- Zaida Sampedro Loan, Deputy Director General of Services to Ministries and Digital Administration of Madrid Digital, the Agency for Digital Administration of the Community of Madrid.

Entities in the field of health

Given the sectorial nature of the Challenge, representatives of organizations linked to health and well-being have been invited to form part of the jury.

- Carlos Gallego Pérez, Director of Area IA of the Tic Salut Social Foundation of the Department of Health, of the Generalitat de Catalunya. This organismpromotes the development and use of ICT in health and social welfare, functioning as an observatory of new trends and innovation. Among its projects we find initiatives to bring the health field Artificial intelligence and Emerging technologies like 5G.

- Carlos Luis Parra Calderon, Head of the Technological Innovation Section of the Virgen del Rocío University Hospital of the Andalusian Health Service. This center has a R + D + i area focused on Learning Health Systems projects, Language Technologies or Big Data for Healthcare Management, among others.

- Noemí Cívicos Villa, General Director of Digital Health and Information Systems for the National system of health of the Ministry of Health. These are organizations that encompass health benefits and services in Spain.

Business associations

The Aporta Challenge seeks to highlight the power of data as the basis for business models that drive the economy. Therefore, the representatives of business entities could not be absent from the jury.

- Antonio Cimorra Boats, Director of Digital Transformation and Enabling Technologies of Ametic (Multisectoral Association of Information Technology, Communications and Electronics Companies). This association represents companies of all sizes linked to the Spanish digital technology industry.

- Olga Quirós Bonet. Secretary General of ASEDIE (Multisectoral Information Association). ASEDIE represents infomediary companies that, from different sectors, reuse information to create value-added products and services.

- Víctor María Calvo-Sotelo Ibáñez-Martín, Managing Director of Digital (Spanish Association for Digitization), which brings together companies present throughout the digital value chain. DigitalEs is part of the Advisory Council for the Digital Transformation of the Government and is a member of the CEOE board of directors.

Universities and data communities

Students and developers are, among others, two of the target audiences of this competition, and for this reason it was also important to have the participation of data communities and universities.

- Emilio López Cano, Contracted Professor of the Higher Technical School of Computer Engineering of the Rey Juan Carlos University of Madrid. Emilio is also the President of R-Hispano, a community of users and developers whose objective is to promote the advancement of the knowledge and use of the programming language in R.

- Fernando Diaz de Maria, Professor and Head of the Multimedia Processing Group of the Higher Polytechnic School of the Carlos III University of Madrid. This entity has an attractive training offer in data, both in degrees like in postgraduate.

- Maria Sanchez Gonzalez, Associate Professor of the Department of Journalism at the University of Malaga and co-organizer of DataBeers Malaga, a non-profit initiative specialized in dynamic events related to the universe of data, including data open data.

The Secretariat of the Jury, with voice and vote, falls to Sonia Castro García-Muñoz, Coordinator of the Aporta Initiative in the Directorate of Digital Public Services of Red.es.

The registration closing date has been extended to February 15

In the same resolution, the closing date for submitting proposals has also been extended to February 15, 2022 at 1:00 p.m. Those citizens who wish to participate in the Challenge must present before that date an idea for a solution that promotes improvements in the field of health and well-being, using at least one set of data generated by Public Administrations, whether national or international

All the available information is published, together with the bases, in the section Aporta Challenge.

If there is a field in which data are of great importance, it is in health. Through indicators obtained from various diagnostic tests and our history, doctors can know what is happening in our body, decide what treatment we should take and estimate how we are going to evolve. But for their estimates to be correct, external data have also been necessary, which have contributed to the acquisition of greater knowledge about different ailments.

When we talk about open data in health we refer to both medical data and other related data that can also have an impact on the health of patients and the services provided. Some examples are:

• Data from medical studies and research. The sharing of clinical and research data has several benefits: it enhances the reproducibility of trials, their verification and reliability, while creating opportunities for new discoveries, among other advantages. In this sense, Directive (EU) 2019/1024, relating to open data and the reuse of public sector information, obliges Member States to adopt open access policies for publicly funded research data. In addition, there are numerous initiatives in the world that promote the opening of this type of data such as the Research Data Alliance. In our country we find proposals such as Datasea, wave Maredata network, which has a guide to guide the opening of these data.
• Well-being related data. The environment, the diet we eat, the sleep pattern, the balance between work and private life, the stress or the physical exercise we do are also patterns closely linked to our state of health, since they can affect our immune system or even our mental health. Many times this type of data is obtained through surveys and statistics that link health and well-being. In Spain, the INE, for example, carries out the five-year National Health Survey, where information is asked about perceived morbidity and use of health services, but also about lifestyle habits and preventive activities. These data are provided in the open so that they can be reused in various studies.
• Data related to health services and management, such as the location of medical centers or pharmacies, schedules or complaints received in hospitals. All of them can be very useful for patients, but also for public bodies when making decisions that improve the effectiveness and efficiency of the health service. These data are often provided by autonomous entities, responsible for their management.
• Patient records. Patient data is also a great source of knowledge, which can be extrapolated to other cases. During the COVID pandemic we have seen how it was necessary to have as much information as possible about the evolution of the disease, since doctors and epidemiologists faced an unknown and documented ailment. The Spanish Society of Internal Medicine (SEMI) has developed a Registration on-line with epidemiological, clinical, treatment, laboratory and radiographic parameters. Another initiative of interest is HealthData 29, a platform that allows healthcare providers and other entities to safely make their open data sets available to the community for research purposes, and which currently has data from LaLiga, Sanitas and HM hospitals. Both are data-sharing initiatives where you need to register or write to request the information.

It should be noted that the anonymization of data - always necessary when talking about open data - is essential to respect patient privacy and sometimes makes opening this type of information difficult.

More than 16,000 health and wellness data at datos.gob.es

In datos.gob.es there is 9,530 data sets in the health category and 7,388 in society and well-being. While the first category includes data directly related to health, such as medical services, health surveys or death data, the second includes data related to active aging, marginalization, personal autonomy, dependency or disability, among other categories more related to society. These categories respond to what is indicated in the Technical Standard for Interoperability for the Reuse of Information Resources.

The main publishers of this type of data are the Canary Institute of statistics, the Statistics National Institute and the Sociological Research Center.

From these data sets, below, we collect the most important ones together with the format in which you can consult them:

1.Statewide

• Ministry of Health. Evolution of the COVID-19 disease. PDF, HTML, CSV.
• Ministry of Health. Vaccination strategy for the coronavirus (COVID-19). HTML.
• INE. Registered physicians by year and sex. CSV, XLSX, XLS, HTML, JSON, PC-Axis
• Institute for the Elderly and Social Services. Management of the System for Autonomy and Attention to Dependency (SAAD). Pdf, XLS
• INE. Statistics of domestic violence and gender violence. HTML.

2.At the CC.AA. level

• Junta Castilla y León. COVID-19 vaccination in Castilla y León. XLSX, CSV.
• Madrid's Community. Register of social services centers. JSON, CSV.
• Generalitat of Catalunya. Hotlines against sexist violence 900 900 120. XML, RDF-XML, JSON, CSV.
• Xunta de Galicia. Map of the health services of Galicia. KML.
• Autonomous Community of Castilla-La Mancha.Accommodation resources for people with physical disabilities in Castilla-La Mancha. XLS, CSV.

3.Locally

• Vitoria-Gasteiz City Council. Drinking water sources in the municipality. OCTET-STREAM.
• Valencia City Council. Noise map for 24 hours. OCTET-STREAM, WFS, WMS.
• Alcobendas City Council.Pollen concentrations. XML, XLS, JSON, ODS, CSV.
• City of Madrid. Inspections for official food control in food establishments. XLS, CSV
• Zaragoza City Council. Pharmacy. API.
• Lorca City Council. Association of social minorities. HTML, XLS, JSON, XML, CSV.

This data can be reused in research and to create services and products related to health, such as those collected in this article.

Do you know of any initiative to open health data? You can share it with us in the comments or send us an email to contacto@datos.gob.es. We will be delighted to read you