ODI Research Fellow Blanka Wawrzyniak studied the secondary use of health data, with a primary focus on the importance of citizen engagement in the health data-sharing process. The research also explored additional pivotal factors influencing health data reuse such as regulatory barriers, lack of proper infrastructure and technical standards, lack of awareness of patients, analysing them within the Polish context alongside considering the broader European perspective.
Towards common secondary use of health data
In recent years, the discourse around expanding access to health data has gained prominence. The COVID-19 pandemic demonstrated the value of health data for patients, doctors, researchers, medical institutions, and government. The necessity for collaborative efforts to address the pandemic's dire consequences highlighted the critical role of maintaining a dynamic flow of information on patients' conditions across various institutions. Simultaneously, challenges associated with health data sharing, including distrust towards managing institutions and other barriers, have diminished patients' willingness to disclose valuable information. This trend was particularly evident in countries where citizens' attitudes toward data sharing are ambivalent and vulnerable to destabilisation, such as in Poland.
The report explores the multifaceted dimensions of health data sharing, delving into ethical, legal, and technological considerations, placing a significant emphasis on the pivotal role of trust. In the Polish context, there has been a noticeable lack of trust in initiatives seeking to enhance access to health data in recent years. Violations of EU law and breaches of human rights by the previous ruling party, combined with incidents such as leakages of sensitive information or cases of cyber surveillance, might have negatively influenced Poles' attitudes toward data sharing. For instance, the reluctance of citizens to share their personal data with public authorities was evident in 2020 when public opinion resisted new regulations proposed by the Ministry of Health. The new regulatory initiative aimed to establish a digital medical information system, mandating all entities providing medical services to input data on various medical events, including pregnancy. While the proposal had legitimate grounds (it was based on recommendations from the European Commission), local context and concerns related to the abortion ban led people to presume that the regulation sought to exert control over Polish women.
The author's conclusion underscores that, without a foundation of trust, individuals may hesitate to participate in data-sharing initiatives, potentially hindering the development of large datasets crucial for advancing medical research and public health strategies. Moreover, the report highlights the increasing importance of trust in institutions governing data. This trust is essential for establishing digital data spaces that facilitate seamless information exchange among stakeholders and member states. Given recent advancements in this domain, fostering trust among patients and ensuring individuals recognize the significance of sharing their health information within a collaborative framework is vital for the success of the future European Health Data Space.
Building a resilient health data ecosystem involves empowering patients as engaged contributors while implementing protective measures against potential ethical concerns and legal challenges. In essence, constructing a robust model grounded in patient trust is not only necessary for the success of health data initiatives but also exemplifies a conscientious and ethical advancement of data-sharing practices across the EU.
This report is authored by an ODI fellow. It draws on concepts developed by the ODI but the author’s views are their own.