Position paper on “Citizen Information Point”

Recommendations from the viewpoint of patient and public advocates and representatives 

This article is 460 words and is an approximate 3-minute read. 

The BBMRI-ERIC Stakeholder Forum – Patients and Citizens Pillar in collaboration with the BBMRI-ERIC team have published a position paper to provide recommendations on the draft guideline of the development and implementation of the “Citizen Information Point” under EHDS Regulation. 

Article 58 of the EHDS Regulation sets out the obligations of Health Data Access Bodies (HDABs) to provide public information electronically and ensure that individuals are informed about their rights under the EHDS and how to exercise them. To meet these obligations, HDABs should establish and maintain a public information system, referred to in the current TEHDAS draft guideline as the “Citizen Information Point.” 

The position paper outlines the key recommendations from patient advocates and representatives to contribute to the development and implementation of an effective, accessible and trustworthy “Citizen Information Point” under the EHDS Regulation. 

The key recommendations are: 

1. The development of EHDS “Citizen Information Points” must be based on continuous multi-stakeholder involvement from the earliest stages of design through implementation and evaluation. Stakeholder engagement should not be a one-time exercise but an ongoing, structured process throughout the lifecycle of the “Citizen Information Points”.
2. The guideline developed by TEHDAS working group should include a harmonised portal structure template for the design and implementation of “Citizen Information Points” across Member States. 
3. HDABs responsible for the “Citizen Information Points” must establish a transparent governance framework for the development, maintenance and review of Citizen Information Points, with meaningful and ongoing participation of citizen and patient representatives. 
4. “Citizen Information Points” must explicitly address how datasets made available for secondary use can be disaggregated by sex, gender, age, disability, ethnicity and socioeconomic status.
5. “Citizen Information Points” must explain not only how and by whom health data is used, but also why secondary use matters and what is the public value created by citizens’ data contribution.
6. Information must be presented in plain language and designed to be accessible and understandable for all citizens, including people with all different disabilities (e.g., blind people, intellectual disabilities, etc.). It must be adapted to different levels of health and digital literacy and should be available in several languages.
7. Transparency should extend beyond legal compliance.
8. “Citizen Information Points” should be viewed as trust-building tools rather than simply repositories of information.
9. HDABs are responsible for ensuring that all information provided through “Citizen Information Points” is accurate, reliable and consistent across language versions.
10. Finally, consideration should be given to creating mechanisms for continuous two-way communication, enabling citizens to ask questions, provide feedback and access information on their rights, complaint procedures and available support mechanism. 

The recommendations presented in this paper are solely from the perspective of patient and public advocates and representatives. 

The full position paper can be downloaded here.