Collaborative session notes:
https://docs.google.com/document/d/19eKHfS4cxxTmevm97ofRaZ7p8Rx1TiDh/edit?usp=sharing&ouid=104358842683409363823&rtpof=true&sd=true

The implementation of data visitation (DV) technologies in health-related sciences offers immense potential for advancing research, innovation, and trustworthy healthcare solutions. DV enables secure, real-time analysis of distributed datasets, addressing privacy and data sovereignty concerns without the need for data transfer. However, the practical adoption of DV technologies remains hindered by challenges in interoperability, ethical governance, privacy, and regulatory compliance. Incorporating FAIR and CARE data principles, along with TRUST principles for digital repositories, provides a critical framework to ensure that DV practices are ethically sound, interoperable, and reliable while maintaining trust and accountability in data sharing. This session seeks to bridge the gap between policy frameworks and operational realities by convening stakeholders from RDA working groups, interest groups, and external experts with transdisciplinary experience and a focus on open science and the need to address the UN 2030 Agenda. Through collaborative discussion, case studies, and actionable recommendations, this session will lay the foundation for advancing DV practices and their alignment with policy, ethics, and regulatory frameworks.

Principal objective

To identify and address critical barriers to implementing secure, interoperable, and ethically governed DV technologies in health-related sciences by fostering collaboration across disciplines, sharing insights from case studies, and exploring the formation of a dedicated RDA working or interest group.

Supporting objectives

1. To examine the technical challenges of implementing DV technologies, including issues of interoperability, scalability, and usability, and to propose solutions for these barriers.
2. To explore the ethical and legal implications of DV adoption, emphasizing alignment with privacy-preserving technologies, data sovereignty, and international regulatory frameworks.
3. To share practical case studies and best practices that illustrate successful applications of DV technologies in genomics, pharmaceutical innovation, precision medicine, and other health-related fields.
4. To engage with FAIR, CARE, and TRUST principles to ensure that DV practices promote responsible and inclusive data governance while supporting open science and addressing data sovereignty.
5. To facilitate cross-sector dialogue and knowledge exchange between RDA members, policymakers, technical experts, and representatives of regulatory bodies to harmonize approaches to DV implementation.
6. To assess the feasibility and scope of forming a dedicated RDA working or interest group to focus on advancing DV technologies in health-related sciences, with an emphasis on transdisciplinary and multi-sector collaboration and alignment with global research priorities.
7. To identify actionable next steps and develop a roadmap for overcoming challenges in the policy-to-practice transition of DV technologies, ensuring that outputs address the needs of a broad range of stakeholders and the UN’s Pact for the Future.

Bridging the gap between policy and practice is essential for advancing the adoption of data visitation technologies in health-related sciences. This session aims to foster collaboration among diverse stakeholders to address technical, ethical, and regulatory challenges while aligning practices with principles such as FAIR, CARE, and TRUST. By developing actionable solutions and pathways, the session will lay a solid foundation for implementing secure and effective DV technologies, driving innovation and supporting global health research priorities.

This agenda is designed to attract a multidisciplinary audience with a shared interest in advancing DV technologies in health-related sciences. Researchers and data scientists working in fields such as genomics, pharmaceutical innovation, and precision and personalized medicine will find value in exploring solutions to the technical and operational challenges they face. Policymakers and regulatory representatives from health-focused organizations will bring insights into aligning DV practices with data governance policies and frameworks, ensuring discussions remain relevant to real-world applications. Technical experts and developers, specializing in areas such as interoperability standards and privacy-preserving mechanisms, will contribute their expertise in addressing the technological barriers to implementing DV solutions at scale.

1. Welcome and session overview (10 minutes)

• Brief introduction to the session objectives and its focus on bridging policy and practice in data visitation (DV) technologies.
• Overview of the importance of aligning DV technologies with FAIR, CARE, and TRUST principles and the UN 2030 Agenda.
• Introduction of presenters and the session format.

2. Short presentations on challenges and opportunities (30 minutes)

• Presenter 1: Addressing technical barriers in DV implementation, including interoperability and scalability challenges.
• Presenter 2: Practical case study on leveraging DV technologies in genomics research to enhance data security and usability.
• Presenter 3: Insights into aligning DV practices with open science, ethical governance, data sovereignty, and international regulatory frameworks.

3. Interactive panel discussion (30 minutes)

• Facilitated dialogue among presenters and attendees on actionable strategies for overcoming policy-to-practice challenges.
• Exploration of how FAIR, CARE, and TRUST principles can guide adoption while addressing barriers such as privacy, scalability, and usability.
• Open dialogue on the potential for transdisciplinary collaboration and global alignment in health-related sciences.

4. Open floor for contributions and Q&A (15 minutes)

• Attendees share insights, questions, and experiences related to implementing DV technologies in health-related sciences.
• Live polling to identify key priorities, challenges, and potential actions from participants’ perspectives.

5. Summary and next steps (5 minutes)

• Recap of the key insights and actionable recommendations from the session.
• Discussion of the feasibility and scope of forming an RDA working or interest group to advance DV technologies.
• Invitation for participants to engage in follow-up activities and contribute to the development of a collaborative roadmap for DV implementation.

The agenda should also appeal to a wide RDA audience interested in data sharing across the disciplines while also welcoming representatives from global health and data-sharing initiatives. These participants will help align the agenda’s outcomes with broader international objectives, including the UN 2030 Agenda. Advocates for open science and interdisciplinary collaboration will emphasize the importance of inclusivity, transparency, and global accessibility, ensuring the agenda outcomes resonate with diverse stakeholders. Together, this dynamic audience will foster a collaborative and outcome-driven dialogue to advance DV technologies.

This session will feature a panel of diverse experts with broad experience spanning technical, ethical, and policy aspects of data visitation (DV) technologies in health-related sciences. These presenters bring transdisciplinary perspectives to address the challenges of bridging policy and practice. Special attention will be given to diversity in backgrounds, gender, geography, and seniority level.

1. [Presenter Name], [Affiliation]: An expert in data governance and policy frameworks, focusing on aligning DV practices with regulatory standards and ethical principles to ensure compliance and trustworthiness.
2. [Presenter Name], [Affiliation]: A technical specialist in interoperability and privacy-preserving technologies, with practical experience in implementing secure and scalable DV solutions in genomics and health data ecosystems.
3. [Presenter Name], [Affiliation]: A researcher and advocate for open science, emphasizing the integration of FAIR, CARE, and TRUST principles into DV practices to promote inclusive and responsible data governance with attention to the needs of data governance, data sovereignty, and open science.
4. [Presenter Name], [Affiliation]: A representative from a regulatory body or health research institution, providing insights into the operational and legal challenges and opportunities of adopting DV technologies across diverse health systems.

These presenters will provide foundational knowledge, real-world case studies, and actionable recommendations to support the objectives of the session. Their contributions will guide discussions and help participants explore collaborative pathways to advance DV practices in alignment with policy, ethics, and global research priorities.

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