The “Mais Dados melhor Saúde” initiative, developed by the Instituto Superior Técnico (IST), emerges as European healthcare systems face financial strain, demographic challenges, and new technological possibilities. The initiative aims to help Portugal establish a model for secondary access (for research, statistics, and planning) to health data.
“It’s the perfect opportunity. Since we’re setting up the entire data access infrastructure, which will be mandatory from a European standpoint, it’s an excellent chance to create a structure that harnesses the full potential of this data,” said Eduardo Costa, coordinator of the “Mais Dados, Melhor Saúde” initiative.
According to Eduardo Costa, Portugal is not starting from scratch and already has advantages such as a good technological base, a digital health agency (Shared Services of the Ministry of Health) – “which many countries lack” -, a unique patient number, which enables cross-referencing and identifying the same patient across different databases, and a population used to using the SNS 24 (App and phone line).
Nonetheless, he points out areas where Portugal is still falling short, such as the absence of “a single entry point for data access requests. In other words, instead of requesting data from each of the 39 Local Health Units, there should be a single portal to centralize these requests.”
“There are situations where it isn’t clear to patients what data is being used. And since the data belongs to the patients, it’s important to ensure there is transparency and security in its use,” stated Eduardo Costa, emphasizing the need for “transparency mechanisms” regarding projects requesting data access and the type of data being collected. This allows patients to choose, as in the United Kingdom, if they don’t want their data to be used.
Part of the initiative’s work has already been done—analysis/diagnosis of the national situation and comparison with international cases—and now experts are moving towards a public discussion, culminating in the formulation of recommendations to be delivered to the government by March.
The meeting held today aims to validate the experts’ diagnosis, highlighting some of Portugal’s advantages and existing gaps, such as a fragmented legal framework, the lack of a National Data Access Body and a national metadata integration catalog, as well as limited integration of private providers.
Experts conclude there is a need to enhance the planning and management of the National Health Service by systematically reusing data to identify needs, monitor access and outcomes, and design effective public policies.
“If I need to design a program to fight obesity, I need to know where these patients are, what characteristics they have, and how they circulate within the health system. For that, I need to analyze the vast amounts of data we produce daily in our system, something we currently do somewhat incompletely,” explained Eduardo Costa. He added, “Our data is segregated in different entities, and we often struggle to connect them to each other.”
He underscores that “secondary data organization” can help reduce healthcare system costs, design more efficient health systems, and understand how to make the patient journey more efficient, leading to health gains.
“It allows me to understand, for example, medication by medication, what value these therapies are generating,” said the specialist, referring to one of the issues frequently mentioned by hospital administrators, especially with the constant annual increase in medication expenses.
He also noted that this secondary use can help determine whether a prevention program brings the expected results, enabling adjustments in measures: “In practice, having smarter public health policies and health investment decisions.”
