IDERHA 2026 Survey Form: European Health Data Space

General information:

1. Which Persona do you identify with? (multiple choices can be selected)

Clinician

Data holder

Researcher/program manager

Patient

Policymaker

Public

Healthcare provider

Public health specialist

Other…

2. Which country do you work in?

General attitude towards Data Health Space programmes:

3. Which statement best reflects your view? (Select one)

Note: Secondary use refers to the use of routinely collected clinical data beyond individual patient care, for purposes such as research, quality improvement, healthcare planning, or the development and evaluation of AI tools.

Contributing high-quality clinical data for secondary use is part of a physician's professional responsibility.

I support secondary use, provided it does not substantially increase physicians' workload.

Secondary use of routinely collected clinical data is not a priority in my clinical work.

I am not sure.

4. What would be the strongest reason for your hospital to participate in a clinical data-sharing initiative? (Select one)

Better evidence to improve patient care and clinical pathways.

Increased opportunities for clinical research and multicentre collaborations.

Access to data, expertise, or tools from other institutions.

Better preparedness for future national and European health data initiatives, such as the EHDS.

Improved institutional reputation.

I am not sure.

Onboarding:

The process of connecting Clinical Data Holders (e.g., hospitals, clinics…) to a unified digital network to enable secure health data sharing via a EHDS compliant platform e.g., IDERHA. Ensuring clinical data can be seamlessly accessed for both primary use (direct patient care) and secondary use (research, innovation, policy-work). Onboarding involves: Legal and Governance Alignment, Technical and Infrastructure Setup, Data Semantic and Syntactic Interoperability and Validation and Quality Assurance.

5. How would an ideal onboarding procedure to IDERHA look like (for you, as data holder)?

6. Which onboarding timeline would be ideal for you (days, weeks, months)?

7. What information is the most critical in convincing your management to join IDERHA?

8. What incentives/motivation is needed to join/decide for connecting your data with other data holders through IDERHA?

9. What activities are currently ongoing within your institution towards making data available in the European Health Data Space?

Justify your ranking.

11. What would help your hospital most when joining a clinical data-sharing initiative for the first time? (Select one)

A clear step-by-step onboarding guide.

A single contact person coordinating the process.

A readiness assessment identifying what is already in place and what is needed.

Examples from hospitals that have already participated.

Starting with a small pilot project before wider implementation.

Data Quality:

Please explain.

User requirement:

13. Do you need to discover existing data from other institutions?

Yes

13a. What aspects of data (specific combinations of features, numbers of records, average values, etc.) or access (fast/fixed time-to-access, use conditions) are most important to know before applying for data access?

14. Do you need to use existing data from other institutions?

Yes

14a. Do you need direct access to individual records?

Yes

14b. Do you need access to processed/aggregated results?

Yes

14c. Do you need to perform cross-institutional or cross-border (federated) data analysis?

Yes

14d. Do you need to perform compute-intensive (e.g. machine learning) data processing?

Yes

Training:

15. What kind of training would you and/or your organisation need to feel well-prepared for making data accessible through a federated health data platform (like IDERHA)? (Select all that apply)

Federated Architecture Basics: Understanding how federated data networks work (i.e., how data stays local at our clinic while queries or algorithms travel to the data).

Local Node Setup & IT Security: Technical training on deploying, securing, and maintaining the local hardware/software node or container environment.

Data Harmonization & Common Data Models: Guidance on mapping our local clinical data to a shared common data model (e.g., OMOP) to ensure query compatibility.

Reciprocal benefit:

Sustainable implementation:

17. What is most needed to make secondary use of clinical data sustainable in your hospital? (Select one)

Dedicated data management or data stewardship staff.

Protected time for physicians and clinical staff.

Long-term funding.

Legal and governance support.

Technical and data science expertise.

Stronger commitment from hospital leadership.