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Liberties, together with several of its member and partner organizations and independent expert Júlia Keserű, has launched the AI in the Healthcare Project. The project is currently gathering data on the use of artificial intelligence systems in healthcare, an issue that poses potential threats to privacy and data protection, in particular highly sensitive, personal information.

We hope to use the project to set a foundation for improved governance in AI healthcare tools that will foster a responsible, accountable environment for the integration of AI in healthcare. In turn, this will allow for the developments and implementation of - eventually paving the road to further safeguards in data protection and AI practices.

The Liberties members and partners participating in the project are Apache (Belgium), the League of Human Rights (Czech Republic), Gesellschaft für Freiheitsrechte (Germany), the K-Monitor (Hungary), the Italian Coalition for Civil Liberties and Rights (Italy), the Amphora (Malta), NJCM (the Netherlands), APADOR-CH (Romania), and Xnet (Spain).

The project at a glance 

The first stage of the project is led by Júlia Keserű. Júlia brings a unique perspective and expertise to this project, with 15 years’ experience working on issues at the intersection of technology and fundamental rights. During the first stage, she is gathering information in multiple ways, including literature review, interviews and consultations with stakeholders as well as submitting freedom of information requests and GDPR-based data subject access requests to government agencies, regulatory bodies, public health authorities, publicly funded hospitals and research institutions. The latter is supported by Liberties’ expert network.

Liberties will lead the second stage of the project, which will begin over the summer and focus on capacity building. This activity will empower watchdogs and civil society groups to become proactive advocates for responsible health AI practices, which is crucial for scaling the impact of this project. By providing these organizations with methodologies, research tools, and collaboration platforms, we will empower them to independently monitor the development and use of health AI systems.

The third stage, to be led by Liberties and its member organizations, will focus on turning our findings into concrete, practical policy recommendations, at both the EU and national levels, in order to promote responsible, transparent, and accountable health data practices across Europe and beyond. Proposals and policy briefs will aim to shape regulatory practices and ensure compliance with existing EU frameworks, such as the AI Act and the GDPR, among others.

AI in healthcare

Artificial intelligence is becoming more and more integrated into our healthcare systems. A primary catalyst for AI's integration into healthcare is the rising demand for interoperability across diverse data sources. This includes linking electronic health records (EHRs) with wearable devices and genetic testing services, and creating cross-border health data platforms such as the European Health Data Space.

These AI models need data – lots and lots of data. They need data in order to be developed and refined, and they will constantly need new data in order to ensure the accuracy and quality of their performance. To fill this need, data are collected from various inputs, including digital health records, wearable devices, mobile health apps, and data brokers. For example, the Truveta project in the U.S. aims to combine genotypic data with de-identified EHR data from over 120 million patients, providing a rich resource for research and innovation.

Yet despite their promise, current clinical AI systems have significant shortcomings that jeopardize successful implementation and safe use. Transparency around sources of data and how it is integrated towards the development of AI systems remains very limited, posing a grave risk for human rights and security, and in some cases, even direct health risks.

Stay tuned...

When Júlia completes her research and data collection in the coming months, Liberties will keep you up to date on all relevant findings and developments. We’ll let you know how the project is progressing as we transition into the second stage, and what to expect later in the year. Stay tuned! 

The project is financed by AI Collaborative.

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