DATE: 18-11-2024 STATUS: FOR REVIEW

 

Background

To make a national health data infrastructure work, it is essential for everyone to recognize the importance of (re)using health data for research, innovation, and policy development. Moreover, significant developments are on the horizon, such as the European Health Data Space (EHDS) and the establishment of a Health Data Access Body (HDAB-NL). Transparency and effective public communication on these topics are crucial for maintaining and enhancing trust.

The central question of the Obstacle Removal Trajectory is: what is needed to enable optimal (re)use of health data for the benefit of citizens and professionals? Obstacles that hinder this process have previously been identified. In 2021, it was determined that the importance of (re)using health data and the communication surrounding it is not sufficiently recognized or collectively promoted due to the existence of various barriers.

This is partly because:

• It is unclear what everyone’s roles, tasks, and responsibilities are; or

• It is unclear who should take the lead and how to exert influence; or

• It is unclear how individuals can contribute; or

• There are few incentives or too many obstacles to contribute; or

• There are too many (apparent) conflicting interests.

Individual considerations, as well as societal discussions, often take place based on fragmented, incorrect, and/or incomplete information.

Communication Strategy for Secondary Use of Data

On December 14, 2023, the Ministry of Health, Welfare and Sport (VWS), the Dutch Patient Federation, and Health-RI published the joint communication strategy on secondary use of data. The aim is to provide tools and building blocks for all parties involved in the Integrated Care Agreement (IZA) to shape their communication towards the general public, healthcare professionals, policymakers, regulators, and innovators. See: .

The initiative stems partly from the following agreement in the Integrated Care Agreement (IZA):

“[c3] Knowledge and awareness of the value of health data and its sharing for secondary purposes are still minimal among citizens, patients, and patient organizations. IZA parties have a duty to make efforts to raise the level of knowledge and awareness and will deliver an action plan in 2023.”

As part of the Obstacle Removal Trajectory and the HDAB-NL program, Health-RI is actively working with stakeholders to foster broad support and commitment for an integrated health data infrastructure for research, policy, and innovation. For an overview of the joint initiatives, see the dashboard. https://www.izadigitalisering.nl/secundair/

The communication goals from the Communication Strategy for Secondary Data Use aimed at the general public are as follows: :

“"Everyone should have a general understanding of what is meant by the secondary use of health data and why it is so important for the quality, accessibility, and affordability of healthcare.”

So that:

• Understanding of the importance of secondary use is high,

• The risks of misinformation, careless reporting on this topic, and politicization are minimized,

• As many people as possible gain and maintain trust in the system,

• As many people as possible can make an informed decision in due time about how their recorded health data is reused.

The platform http://GegevensVerbeterenLevens.nl

Open

The platform http://gegevensverbeterenlevens.nl contributes to raising awareness and knowledge about the secondary use of health data for citizens and patients.

In addition to accessible information at a B1 language level and examples of secondary use, the platform provides details about the current situation ("as is") regarding safety, privacy, and data ownership. It also allows users to ask questions and consult a growing FAQ database.

Within the Obstacle Removal Trajectory and the HDAB-NL program, providing information about secondary data use to various target groups is essential. In addition to general information and examples of secondary use, users can find details about the "as is" situation regarding safety, privacy, and data ownership. The website also offers the opportunity to ask questions and access a developing FAQ database.

This platform was developed in collaboration with the Ministries of Health, Welfare and Sport (VWS), Education, Culture and Science (OCW), and Economic Affairs , as well as stakeholders within the Obstacle Removal Trajectory. 

Animations and Videos on the platform Gegevens Verbeteren Levens (Data Improves Lives)

Development in Public Infromation and Communication on Secondary Data Use

In addition, active efforts are being made within the Obstacle Removal Trajectory and the HDAB-NL program to communicate about secondary data use.

The Ministry of Health, Welfare and Sport (VWS), Health-RI, and stakeholders will develop a Communication Toolkit for secondary data use in 2024–2025.

View the presentation from the IZA quarterly meeting on September 26, 2024, about the Communication Toolkit for Secondary Data Use here.

When will a national public campaign on secondary data use be launched?

In consultation with the Ministry of Health, Welfare and Sport (VWS), the Dutch Patient Federation, and stakeholders, a decision tree has been included in the Communication Strategy for Secondary Data Use to clarify the policy for external communication on secondary data use. Once the Ministry of VWS and political leaders have made policy decisions regarding secondary data use and there is a concrete course of action for citizens, it will first need to be assessed whether these developments align with (inter)national agreements (e.g. European Health Data Space, Integraal Zorgakkoord, and the Nationale Visie en Strategie). Only then can a broader public campaign on secondary data use potentially be launched.

The Ministry of Health, Welfare, and Sport (VWS) is in the lead for the public information and campaign on the secondary data use of health data.See for the full communication strategy.