Public Consultation on areas for policy development around health data sharing, access and use

Our initial report identified 10 thematic areas which discuss an aspect of data access, sharing or use that could be supported by additional and/or changes in policy. These recommendations can be read in detail in the Deliverable Report D6.3. The recommendations under the thematic area are suggestions from the workshops undertaken within IDERHA, and not final. The thematic areas and recommendations in this report had not been considered in terms of priority or feasibility.  

As the breadth of topics covered in this initial round of thematic areas and recommendations is wide, we acknowledge it will not be possible to develop detailed technical recommendations in all these areas in the time-frame of the project. The next stage of work (in 2025), will therefore be to develop detailed recommendations against one thematic area and/or one cross-thematic sub theme, while capturing wider stakeholder perspectives on all 10 areas in parallel for potential activity in 2026. Initial conversations with our external advisory council suggest that a focus on consent and the factors influencing consent for secondary use of data, will be this focus area for immediate next steps. The answers to this consultation will inform our ongoing work in this space and future priorities.  

Our Ten Thematic Areas 

• Thematic Area 1: Aligning national and EU-wide legal frameworks and establish common interpretations and standards
• Thematic Area 2: Improving data management and access procedures
• Thematic Area 3: Engaging with the public and promoting health and data literacy to enhance trust in data-sharing initiatives
• Thematic Area 4: Establishing and maintaining high data security measures
• Thematic Area 5: Following an ethical framework for data-sharing and use
• Thematic Area 6: Improving semantic interoperability
• Thematic Area 7: Allocating enough resources for the implementation and sustainability of data-sharing initiatives
• Thematic Area 8: Creating standardized incentives for data-sharing
• Thematic Area 9: Exploring consent mechanisms
• Thematic Area 10: Establishing a network for data-sharing initiatives to leverage alignment and synergies  

These thematic areas were formed through consultation with several different types of stakeholders including patients, patient advocates, diversity and inclusion advocates, Data Protection Officers (DPOs), Information Governance Officers and representatives from established data-sharing initiatives. They also consider and build on the work of other recommendations already created in this area, for example the reports of TEHDAS 1, as well as insights generated in other IDERHA work packages and tasks. 

Aim of this consultation 

IDERHA recognises the importance of involving stakeholders and the general public in its work on making policy recommendations for sharing, access, use and reuse of heterogenous health data in regulatory and HTA decision making. By public consultation, the consortium aims to gather insights, opinions, and concerns from a diverse group of stakeholders to further qualify our work. The aim of this public consultation is to: 

1. Share and validate the importance of our initial findings
2. Understand which aspects of the thematic area we have selected to focus on initially (i.e. factors influencing consent for secondary use of data) are of importance to stakeholders to inform immediate next steps,
3. Explore where work is already being undertaken outside of the IDERHA project to help us prioritise our areas of focus
4. Determine which thematic areas are of importance to stakeholders to inform where our future priorities should lie 

There are 13 questions in this survey, and we estimate it will take you around 10-15 minutes to complete. 

Data Protection and Privacy 

We kindly ask you to participate in this survey, which is voluntary. By participating we will process your personal data for the purposes of this survey in accordance with our Privacy Policy  

Survey

Please complete the survey by 14^th of March.