Digital Health Network

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Why a Network on Digital Health?

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.

Regina Beets-Tan (Past Co-Chair of the Digital Health Network) and Wim Oyen 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.

Unlocking the potential of digitalisation in cancer care – No Stopping Us Now!

Ahead of the European Cancer Summit 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. 

Wim Oyen, Co-Chair of the European Cancer Organisation’s Digital Health Network, said: “We are at a critical juncture in the digital health revolution. As evidenced by our Network’s paper today, there is a shared understanding by all stakeholders of the power of data and digital health solutions to advance cancer care. But known obstacles remain. It’s time to be precise about these, prioritise and take pragmatic and achievable actions now. Regulatory barriers are frequently cited but left unaddressed. Interoperability is not a new call to make, yet we remain short on defined targets to progress beyond this issue. The other pillar of advancing digital healthcare’s contribution to cancer care is addressing the known needs of digital literacy, for both patients and healthcare professionals.” 

Regina Beets-Tan, Past Co-Chair of the European Cancer Organisation’s Digital Health Network, said: “In my role within the EU Cancer Mission Board I have been pleased to join with colleagues in helping to ensure digital has been firmly part of that flagship EU cancer policy initiative. As our paper makes clear today, there is a suite of exciting EU initiatives on digital healthcare presently that can all combine to accelerate change. However, ultimately, their overall success will be dependent on fully preparing the environment across Europe for their utility. This means acting firmly on the 3 main calls of our report today: reducing regulatory barriers; political commitments on delivering interoperability; and, getting healthcare professionals, and the population at large, ready for the digital revolution in cancer care.” 

Harnessing the Power of Data in Cancer Care: Data Sharing and Artificial Intelligence

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Panel discussion at European Cancer Summit 2021 session "Harnessing the Power of Data in Cancer Care: Data Sharing and Artificial Intelligence".

An opportunity was taken at this year's European Cancer Summit on 17 & 18 November to articulate reflections from the Network during the session titled “Harnessing the Power of Data in Cancer Care: Data Sharing and Artificial Intelligence”. 

A wave of digital innovation is changing the way we practice cancer care, and offering fresh opportunities for improvement. But change, as always, brings challenges and some obstacles can become persistent. Speakers and panellists shared their perspectives and suggestions on this agenda, with a shared aim of wanting Europe to go further, faster, in delivering the promise of digital for cancer care. 

Regina Beets-Tan, Past Co-Chair, Digital Health Network, stated that the digital and AI revolutions will change the way we practice cancer care. Beets-Tan suggested that the human-machine interaction can augment human performance and clinical decision-making.  Providing examples of clinical applications related to imaging, Beets-Tan highlighted the fact that AI enhances and upgrades radiologists’ roles. 

Wim Oyen, Co-Chair, Digital Health Network, suggested that digital health and data-driven solutions can accelerate the shift towards patient-focused cancer care. Oyen stated that digital literacy, education, training, and awareness programmes for both patients and healthcare professionals (HCPs) are critical. Oyen described the need to ensure interoperability and appropriate standardisation, to overcome technical barriers, and to address the fragmentation of data. 

Andre Dekker, Professor of Clinical Data Science and Medical Physicist, MAASTRO Clinic, listed several barriers to sharing data:

"The problem is not only technical, but also administrative, political, and ethical. Further legal and technical governance is required to ‘bring the research to the data’. Because there are often linguistic and interoperability issues when it comes to secondary use of data, any exchange of high-quality health data should follow the ‘FAIR’ data sharing principles: Findable, Accessible, Interoperable and Reusable."

Domenico D’Ugo, President of the European Society of Surgical Oncology (ESSO) and Full Professor of Surgery at Catholic University of Rome, Italy, shared experiences of AI in cancer surgery and treatment. He stated that big data and AI should be introduced in undergraduate curricular. D’Ugo recommended patient-driven AI systems, public awareness, European funding and regulations on AI, and promotion of harmonised standards. 

Ceri Thompson, Deputy Head of Unit eHealth, Wellbeing and Ageing (DG CNECT), European Commission, provided an overview of the Commission’s framework for Digital Health. Thompson stated that it is hoped that cancer patients will be early beneficiaries of these new developments.  

Ivars Ijabs MEP, Member of the European Parliament’s Special Committee on Beating Cancer (BECA) stated that the exchange of data is critical for success, and underlined the stated role and unintended consequences of the General Data Protection Regulation (GDPR). The GDPR, said Ijabs, should be about sharing data, however, in many ways it has prevented better access to data. The implementation and interpretation of the GDPR needs to be harmonised across the EU. Ijabs also pointed to a possible future revision of the GDPR, to ensure that data can be easily used for cancer research and treatment. 

Gilly Spurrier-Bernard, Vice-Chair, Patient Advisory Committee, stated that data needs to be ‘query-able’ wherever located, and should be of high quality and standardised. Spurrier-Bernard called for the use of data in research to be relevant to patients and taxpayers, and that patients should be able to access to their own data. 

David Anstatt, Vice President, Business Insights & Analytics, Research & Development, Bristol Myers Squibb declared that data is the lifeblood of the industry, especially, in understanding the safety of, and in the development of, medicines. Anstatt also recognised the need to respect patient privacy and adhere to compliance regulations, whilst at the same time also recognising how we adhere to advances in science.  

Further recommendations about the digitalisation of cancer care are provided in the European Cancer Summit 2021 Declaration.  

Advancing the promise of digital for cancer care sooner will require: 

- Review of the application of the General Data Protection Regulation (GDPR) in respect to key aspects of cancer care; 

- Acceleration of interoperability between cancer registries (including via published interoperability targets); and 

- Active support for increasing the digital literacy of citizens and healthcare professionals.

  • Find out more on the European Cancer Summit 2021 here.
  • Read the European Cancer Summit 2021 Report here.
  • Watch the session recordings and access valuable resources here.

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 

 

To find out more about this Network, or support our work, please contact us here.

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