DigitalHealthEurope recommendations on the European Health Data Space
Supporting responsible health data sharing and use through governance, policy and practice
After almost two years of intense consultations with nearly 140 stakeholders and experts from diverse areas, DigitalHealthEurope has developed proposals for regulatory action, policy and strategy, as well as further actions of support to enable responsible health data sharing and use. These recommendations are directed towards the envisioned European Health Data Space (EHDS), which the European Commission will define in a specific legal framework until the end of 2021. Aim of the EHDS is to facilitate the sharing and uses of Real World Health Data within and especially beyond healthcare.
In this context, DigitalHealthEurope presents 32 actionable recommendations addressing three significant transition challenges for the EHDS:
- From privacy protection to citizen protection.
- From “citizen as data subject” to “citizen as key change agent in the health data ecosystem”.
- From policy and regulatory frameworks to engagement, adoption and implementation.
Empowering citizens and building a healthier society through digital health
DigitalHealthEurope will provide comprehensive support to the Digital Health and Care Innovation initiative in the context of the Digital Single Market Strategy. The project’s approach involves a number of actions that will boost innovation and advance the Digital Single Market priorities for the digital transformation of health and care (DTHC), as outlined in the European Commission’s 2018 Communication on the topic. The priorities concern:
- citizens’ secure access to and sharing of health data across borders
- better data to advance research, disease prevention and personalised health and care
- digital tools for citizen empowerment and person-centred care.
To achieve these three priorities, the project work plan offers two forms of support.
Together, they will form a common vision of EU coordination and support for DTHC beyond 2020.
Support to large scale deployment of digital solutions for person-centred integrated care
DigitalHealthEurope’s main objective the deployment of digital solutions for person-centred integrated care. Assessment tools will be used to identify, analyse and select successful initiatives which are highly impactful and replicable. DigitalHealthEurope will also provide structured advice on EU funding instruments and financing sources. The selected initiatives will have the opportunity to pursue replication and scaling-up. This will be done with the aid of instruments such as matchmaking and a twinning support scheme. More than 45 twinnings between more than 90 organisations will be funded. A deployment support service will include guidelines, checklists and documented successful approaches. These results will contribute to capacity building. They will help define the “building blocks” for the scaling-up of innovative practices. These new resources will be widely disseminated. The aim is to encourage even wider uptake of twinned digital innovation and the assimilation of lessons learned.
Support to DTHC innovation through collaboration in multi-stakeholder communities
DigitalHealthEurope will also facilitate the creation of a shared platform for multi-stakeholder communities. These communities directly address the three priorities.
Each of the communities will carry out concrete activities. With the help of associated experts and contributors, they will provide key DHE outcomes such as white papers, guidelines and policy recommendations.
DigitalHealthEurope will ensure the mutual flow of information between the two support activities.
The results will be channelled into drafting a roadmap, advice and recommended actions.