The future of La Meva Salut: quo vadis?

La Meva Salut (LMS) (My Health) is a personal and secure digital space that the public health system of Catalonia provides for citizens. It allows them to conveniently access (via a mobile phone or online) their medical information (e.g. clinical reports, test results, vaccinations and prescribed medication) and perform different health procedures without having to visit their health centre in person. It also makes it easier to communicate with healthcare professionals, manage appointments and obtain documents such as COVID certificates and discharge reports. It’s a tool that’s key to promoting the self-management of health and improving the relationship between people and the healthcare system.

It was launched in 2015 as a tool to provide citizens with access to their personal health information and foster a more active relationship with the healthcare system. It initially began with basic functions, but it has expanded and improved over time, particularly during the COVID-19 pandemic, when it became a key instrument for downloading certificates, viewing test results and communicating with the healthcare system in a seamless manner.

Ten years after its launch, we propose a series of reflections on the future of LMS to encourage debate that leads to steps forward.

The local, European and technological context

LMS has been in operation for a number of years. 5.8 million citizens of Catalonia have gained access to and used LMS. It’s perceived as normal in a digital society such as today’s.  It would be unthinkable for it to disappear; citizens expect it to acquire more and more features.

Europe is committed to the EHRxF (European Electronic Health Record eXchange Format) to guarantee ongoing and high-quality medical care within the European Health Data Space – MyHealth@eu, thus facilitating exchanges of health data between EU member States, and it seeks to confer upon all its citizens the right to a safe space under their control, with health-related personal data and services.

For a number of months, among numerous other services, emulating the American “Blue Button”, LMS has permitted downloads of the EPS (European Patient Summary), “a document that contains the most relevant clinical information to enable professionals from other EU countries to attend to any citizen who requests unscheduled healthcare outside the country” in EHRxF format. A short clinical history for citizens’ use: the first time that they can access their health data in a digital and interoperable format.

The data related to specific health factors (social, economic, environmental, habit-related, genetic, clinical, etc.) are increasingly known, plentiful, precise and relevant when it comes to caring for people (assistance), answering unresolved questions (research) and proactively making the frequently advocated but barely exercised “preventive, predictive and personalised medicine” a reality.

The current-day situation in Catalonia regarding health-related personal data

With respect to the availability of data in the healthcare field (primary use), the degree of digitisation of the public health sector and the growing and atomised private sector is high, albeit with zero interoperability between the two; while the process for the digitisation of information in the social sphere, both in the home environment and in residences, is just beginning, the personal data resulting from research projects, including the incipient genetic sequencing, are yet to be integrated or made easily available.

As for the reuse of data for non-healthcare uses (secondary use), the situation is one of stagnation, stemming from the need to balance the rights to privacy, confidentiality, security, accessibility and availability.

In short, current-day Catalans enjoy, through LMS, access to part of their health data, although they aren’t completely integrated, nor are they completely interoperable, nor are they particularly available with solely data consultation services, and they depend on the centres at which they are processed, which may have different services but practically no proactive, preventive or personalised ones based on the real-time use of their data, with the consequent problems related to efficiency, equity and quality.

How to move forward in Catalonia

In social terms, we are moving towards individual empowerment and person-centred care. Due to legitimacy and feasibility, as well as legality in Europe, the comprehensive management of all these data can only be exercised by the citizen, who must sovereignly decide what to use them for and under what conditions.

The public administration must evolve LMS towards a secure, interoperable and trusted personal digital health space in the hands of citizens. The above entails giving citizens the power to answer these questions:

• Which data enter and leave their personal space?
• Who has access to their data? Under what conditions?
• Which services do they use?
• Who do they want to interact with via LMS?

The service provider (the public administration) must uphold the trust of citizens by guaranteeing that no one will access their data without their permission and conditions (digital sovereignty) and that the services they provide to citizens for information, recommendations, advice, guides and guidelines for the promotion, prevention and monitoring of health are certified and validated by the health authorities.

This new framework for the governance of personal health data will allow their use for research and innovation in the service of the common good while respecting rights with absolute security and place Europe on a highway towards competitiveness and economic and social prosperity.