DATE: 15-11-2024 STATUS: FOR REVIEW

 

The voice of citizens and patients is important when it comes to the (re)use of health data! Health-RI gives shape to this through its Patient & Public Advisory Committee and the Societal Dialogue.

Patient & Public Advisory Committee

The Patient & Public Advisory Committee offers a societal perspective and thereby advocates public interests within Health-RI. The board provides constructive advice and contributes to governance and various themes within Health-RI. The Patient & Public Advisory Committee aims to provide a national platform and currently consists of:

• Patients and their representatives

• Citizens with an interest in research on (an infrastructure for) health data, including participation of healthy individuals in data research

• Professionals involved in (or researching) the societal and patient perspective on data research

The core of the Patient & Public Advisory Committee meets once a month to discuss developments, form opinions, give advice, and plan further actions when necessary. Topics that are addressed include current practices, problems, concerns, or new developments. These are raised either by the board or at the request of Health-RI.

Societal Dialogue

In addition to the Patient & Public Advisory Committee, Health-RI organizes discussion sessions with a broader group of patients and citizens: the Societal Dialogue. These continuous dialogues, which began in September 2023, are a key part of patient and citizen engagement within Health-RI. The sessions are exploratory. The goal is to map the variety of opinions, considerations, interests, and concerns among citizens and patients about a specific theme, and to gain an understanding of what citizens and patients would consider an ideal way of working or scenario. The sessions provide Health-RI and its partners with direction and vision on where we should strive. The sessions consistently show that this involvement is crucial for ensuring a safe way of handling data, in a manner that citizens and patients trust. The sessions facilitate an open discussion with a broader group than just the regular members of the Patient & Public Advisory Committee within Health-RI.

The Societal Dialogue in 2024

During several sessions, each with a specific topic, Health-RI engaged with citizens and patient (representatives) over the past year. This process has helped map the diversity of opinions, considerations, interests, and concerns among citizens and patients, and has provided insight into what citizens and patients would consider an ideal scenario for the reuse of health data.

Topics discussed so far include:

1. Consent regarding reuse of health data: What factors influence the preference for opt-in or opt-out?

2. Long-term information provision and consent regarding health data: A citizen journey.

3. Models for trust-building support: Making it easier for citizens to make a consent decision.

4. Action options for handling sensitive types of data/biosamples.

5. Data use by commercial entities.

A summary report of these discussions can be found [here]. This report has been handed over to the Ministry of Health, Welfare, and Sport (VWS), the Ministry of Economic Affairs (EZ) and the Ministry of Education, Culture and Science (OCW). VWS was also present as an observer in all sessions. The results of the dialogues are being used in the development of issues related to consent, information provision, and data management, including advocating for citizen involvement in the HDAB (Health Data Advisory Board) and through legislative developments such as the position on the draft the Wet zeggenschap lichaamsmateriaal. Specific concepts developed through the dialogues, such as the citizen journey from session 2, will be further explored and elaborated.

The Societal Dialogue in 2025

The discussions have repeatedly proven their value by bringing out all the nuances from the citizen and patient perspective while always distilling a few clear key messages. The dialogue will continue in 2025.

However, with one difference: Health-RI would like to visit other organizations! So far, the sessions have been organized at Health-RI. This has attracted a select group of individuals who are sufficiently involved in the subject matter to travel to Health-RI. While this group provides a good starting point for the discussion, it is important to engage with a broader range of (groups of) citizens and patients. After all, the infrastructure for the (re)use of health data must align with the wishes and expectations of as many citizens and patients as possible.

Therefore, we would like to organize dialogues at other organizations such as patient associations, healthcare organizations, and possibly libraries or schools. The dialogue could be part of an already organized day or afternoon, such as a patient day or members meeting. We can create a tailor-made program for the dialogue together. The topic is up for discussion: the (re)use of health data in general, or specific subjects such as consent, data protection, (ethics) review, transparency, support for citizens and patients, patient involvement, EHDS (European Health Data Space), use by commercial entities, or another aspect of the reuse of health data that is relevant to your organization.

Are we welcome at your organization? Please contact Miriam Beusink, Secretary of the Patient & Public Advisory Committee, at miriam.beusink@health-ri.nl.