European Cancer Summit 2024 Session: Building the Digital Future: from Legislation to Implementation from the Digital Health Network

Watch the session recording here to discover the rich and diverse discussions of this session.

European Cancer Summit 2023 Session: Digital Health - A Powerful Ally in the Fight against Cancer

Watch the session recording here and read the full European Cancer Summit 2023 Report to discover the rich and diverse discussions of this session.

Action Report on the European Health Data Space

After the presentations and contributions shared during the June 2022 ECO Community 365 Roundtable Meeting on the European Health Data Space and Cancer, we published an action report "The European Health Data Space and Cancer: Applying Lessons Learnt for Successful Implementation". 

The roundtable aimed to:

• Increase awareness on what data can do for cancer, and what the European Health Data Space means for the oncology community
• Identify lessons learnt from pre-existing EU-wide projects on data sharing
• Explore European Health Data Space implementation challenges, including those related to GDPR and data interoperability
• Provide political understanding and suggest next steps for the EHDS.
  
  

Position Paper on Harnessing the Power of Data

In November 2021, the Digital Health Network published a position paper, providing advice to the EU, the World Health Organization (WHO) and national governments on how to harness the power of data and digital for better quality cancer care. The paper conveys consensus from healthcare professionals, patients, and the treatment and service development sector, and other invited experts. 

"Unlocking the potential of digitalisation in cancer care – No Stopping Us Now!" sets out evidence and suggestions across multiple areas of technological development, including: big data, artificial intelligence, telemedicine, robotics, and virtual reality. 

Key recommendations include: 

• Addressing known regulatory barriers to the advance of digital healthcare such as cited problems in the application of the General Data Protection Regulation (GDPR) 
• Advancing the agenda of digitalisation and data interoperability in cancer care, including by setting strong targets for further alignment and commonality in approach between cancer registries in Europe 
• Supporting the advancement of digital health in cancer care with tailored support to develop the digital literacy of both patients and healthcare professionals 

Benefitting from the views and contributions of more than 18 organisations, the paper sets out a positive vision of the opportunities to be realised from all major fields of present innovation in digital healthcare, and provides a mandate from the European cancer community to secure further action from political decision-makers. 

Engaging with European institutions 

With regards to the busy European policy agenda pertaining to data and digitalisation, the Digital Health Network took part in conversations between relevant European institutions to better inform the development of upcoming policy initiatives.  

In responding to the European Commission consultation on the European Health Data Space, the Digital Health Network expressed its strong support for the concept, envisaging the initiative to achieve many benefits for healthcare, research and policy. However we also emphasised the need to: 

• Ensure the right balance is struck between good governance and protecting data safety whilst not overburdening the cancer research environment; 
• Seek European level approaches to many of the regulatory questions in order to prevent further divergence in national approaches. 
• Establish targets and indicators for the interoperability of heath data, including such matters as registry interoperability. 

Read our full response here.

In responding to the Artificial Intelligence Regulation Consultation, the Digital Health Network’s response expressed the potential of Artificial Intelligence in improving cancer diagnostic and treatment while emphasising the need for:  

• A strong pan-European framework on AI applications and rules; 
• Requirements for safety, reliability and trustworthiness for any AI systems; 
• Proportionality of the proposed regulation to the level of risk; 
• Integrating this new regulation within existing EU regulations. 

In responding to the Data Act Consultation, the Digital Health Network stressed the importance of ensuring a better portability of health data, under the General Data Protection Regulation (GDPR), through specific provisions, including:  

• The establishment of standards for the portability of data; 
• The establishment of EU targets for achieving greater interoperability of health data, including in respect to cancer registries;  
• The implementation of protocols and certifications to ensure a more harmonised application of GDPR across the European Union.  

In addition, In May 2021, Professor Regina Beets-Tan, Past Co-Chair of the Digital Health Network, was invited to present recommendations to the European Parliament’s Special Committee on Beating Cancer (BECA). Key points emphasised included: 

• Artificial Intelligence (AI) supplements and enhances the work of healthcare professionals, it does not replace it. 
• AI can be deployed to not only improve detection and diagnosis of cancer, but also improve treatment decisions and patient outcomes (including allowing for less invasive treatment) 
• AI can help health systems organise and deploy resources more efficiently, including HCP clinical and task time. 
• EU Initiatives such as the Survivor Smart-Card, Cancer Patient Digital Centre, Cancer Imaging Initiative, all have important roles to play in delivering the promise 
  
  

Background

The advance of digital technology continues to revolutionise all our lives on a seemingly ever-increasing basis. The provision of cancer care is no different in this respect.

Opportunities abound to improve practice in all areas of cancer care through better deployment of technology. This includes taking up tools already available, as well as harnessing rapidly emerging technologies such as Artificial Intelligence (AI) and machine learning. However, doing so in an effective and cost-efficient manner is no easy feat. Careful consideration is required with respect to such issues as implementation pitfalls, best practices, and the overall vision of future practice that is being sought.

With this in mind, our Network on Digital Health aims to assist the European cancer community and policy-makers in navigating the challenges of digital cancer care and maximising its possibilities.

Our Network Co-Chairs convened the first virtual meeting of Network Participants in May 2020, followed by meeting with our Patient Advisory Committee and Community 365 in September 2020. Initial priorities identified by the Network include:

• Defining and promoting research needs  
• Promoting approved education opportunities for HCPs on Digital Health
• Identifying and responding to relevant policy initiatives at the EU level (EU Cancer Mission, Europe’s Beating Cancer Plan) on Digital Health topics, such as GDPR, the European Health Data Space and the EU Cancer Mission Board’s proposal of a European Cancer Patient Digital Centre.

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