Information Tools for Informed Choices About the Management of One's Health Data

How did your project come about?

The LUSS project was developed to address a significant gap in the management of health data. Health service users often lack access to sufficient information about the use of their personal data, while healthcare professionals and patient and family associations were not equipped with the tools to answer related questions effectively. Recognizing this need, LUSS initiated a project to create practical resources that empower users to make informed decisions about their health data.

What are your project objectives?

The primary goal of the LUSS project is to develop two comprehensive information tools that address the fundamental questions of health service users about the primary and secondary uses of their health data. The project seeks to empower users by promoting informed management of their data while extending discussions to the 8 Caring Technology Principles (8CTPs). These tools are designed to help users understand their role in data governance and transparency, allowing them to actively participate in decision-making processes regarding their health data. Additionally, the project equips healthcare professionals and associations with the knowledge and resources necessary to guide patients effectively and raise awareness of the ethical dimensions of data use.

Why is your project important?

This project is crucial because it empowers health service users to take control of their health data through informed decision-making. By bridging the knowledge gap between patients and healthcare professionals, the project ensures that health data is managed responsibly and ethically. The tools developed as part of this initiative enable users to understand the complexities of data governance and transparency, turning them into active participants rather than passive recipients. In addition, the project fosters a broader understanding of human-centric technology principles, ensuring that technological solutions in healthcare are developed and adopted with a strong ethical foundation.

How are you proceeding?

The project is structured into six key stages. First, the team conducted an analysis of existing tools, services, and user needs to identify the gaps in health data management. This was followed by consultations with health service users and healthcare professionals through online surveys and participatory workshops, focusing on the primary and secondary uses of health data.

Based on the insights gathered, two tools were created: one addressing the primary use of health data and the other focused on secondary use and the 8CTPs. These tools were tested during further workshops, allowing feedback from patients, family associations, and healthcare professionals to shape their refinement. The final versions were then disseminated widely through LUSS and its partners, with 30,000 copies printed and distributed at events and via organizational channels. Finally, the project was evaluated through surveys and partner reviews to assess its impact and identify opportunities for further improvement.

What are the tools being proposed?

The two tools developed by LUSS provide detailed information on managing personal health data and its secondary uses. They cover critical topics such as the role of users in data governance, their participation in technology development, and the importance of transparency in data policies. These resources are designed to equip users with the knowledge needed to make informed decisions about technological solutions. Additionally, they serve as a valuable guide for healthcare professionals and associations, enabling them to address patient questions effectively and raise awareness about the broader implications of health data use.

What challenges have you faced?

The project faced several challenges, including the need to identify essential information from a vast array of existing resources. Encouraging participation from diverse groups of users also proved to be complex. Another significant challenge was refining the tools to ensure they were accessible, practical, and user-friendly while still addressing the nuanced needs of health service users and professionals.

What change or impact are you aiming to achieve?

The project aims to empower health service users by providing them with the knowledge and tools needed to manage their health data responsibly and make informed decisions. It also seeks to equip healthcare professionals with the resources necessary to engage in meaningful dialogue with patients about health data. Ultimately, the project aspires to transform users into active contributors in the design and development of future health technologies, fostering a culture of ethical and human-centric innovation.

Who are the project partners?

LUSS is collaborating with several key partners to achieve the project's goals. The PPLW (Plateforme de Première Ligne Wallonne) has played a vital role in disseminating surveys, recruiting workshop participants, and distributing the final tools. Culture & Health has contributed expertise and conducted the end-of-project evaluation. Additionally, YUZA has supported the project by facilitating workshops and reviewing surveys, ensuring the tools meet the needs of users and professionals alike.

Where is the project active?

The project is active in Brussels and Wallonia, utilizing the networks of LUSS and its partners to reach healthcare users and professionals across these regions.

How does this contribute to the 8 Caring Technology Principles learning community?

The LUSS project aligns closely with initiatives like Teckno2030 in Action and LiCaLab workshops, ensuring that its tools complement and enhance existing efforts. Through collaboration with other projects, LUSS contributes user-focused insights and practical tools for implementing the 8CTPs. By actively participating in the learning community’s discussions and meetings, LUSS enriches the collective understanding of ethical technology adoption and empowers health service users to make informed choices about their data.

This comprehensive approach highlights the LUSS project as a model for fostering informed decision-making and ethical engagement in health data management.

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