During the second day of the summit, the participants discussed patient-centred and data-driven health and care, citizen’s health data sharing, accelerating health data connectivity and the future of federated datasets.
The second day of the Digital Health Europe Summit focused on how health data can enhance integration between health and social care and better manage healthcare systems and services.
During the first session on patient-centred health and care, the panellists Nicola Bedlington (European Patients’ Forum (EPF), Lyudmil Ninov (EPF), Ivett Jakab (EPF Youth Group) and David Magboulé (LabToMarket) shed light on the influence of COVID-19 on the digitalisation of healthcare and put under the spotlight once again how access to digital health is very much unequal for different societal groups and organised in different ways across Europe. Nicola Bedlington (European Patients’ Forum (EPF)) stressed that the patients’ community was disproportionally affected by the COVID-19 crisis, and less than 50% did not have access to the European Health Records. Thereby, she emphasised the importance of accessibility, interoperability and deep cooperation at all levels: local, regional, national and European. Her colleague, Lyudmil Ninov proposed three recommendations to enhance patient empowerment: 1) co-design digital health from innovation to policy; 2) education, training and empowerment; 3) develop policies focused on person centricity. Lyudmil also stressed the importance of effective cooperation between patients and healthcare professionals and pointed to DHE’s white paper on that topic. Ivett Jakab emphasised the importance of including the youth perspective. In contrast, David Magboulé put forward an industrial point of view and focused on the need for digital literacy for both patients and healthcare providers. Reluctance to co-design digital solutions with users and countries’ fragmented approaches to digital health adoption were mentioned as the main pitfalls.
The second session of the day was dedicated to the citizen’s health data sharing. The moderator Carina Dantas (ECHAlliance), and panellists Prof. Mark Lawler (European Cancer Organisation / Queen’s University Belfast), Nilsy Desaint (Merk Sharp & Dohme), Danny van Roijen (European Coordination Committee of the Radiological, Electromedical and Healthcare IT Industry), and Gözde Susuzlu Briggs (EPF, Data saves lives) contributed to the debate around citizen-controlled health data sharing, especially regarding adequate governance models. The session started with a COVID-19 use case and continued with an analysis of the results from a large-scale survey on citizens’ attitudes towards health data sharing. Carina Dantas demonstrated important insights on citizens’ sharing of health data, such as, for example, the willingness of 76% to share data for research. The full results of the survey can be found in the DHE white paper on citizen-controlled health data sharing and governance. Finally, the participants considered citizens’ and patients’ perspectives on the topic. Gözde Susuzlu Briggs added that the first step would be to educate communities before engaging them to have valuable conversations and long-term relations built on trust.
After that, the forum focused on accelerating health data connectivity. Experts Dr. Rainer Thiel (empirica), Dr. Dipak Kalra (European Institute for Innovation through Health Data), and Sara Riggare (Uppsala University) discussed the heterogeneous levels of connectedness between health organisations and between health organisations and citizens/patients in Europe. As a result, they stated that citizens are key actors to accelerate health data connectivity under two conditions. Firstly, tools need to be available to empower them. Secondly, the right climate of health data activism needs to be created in society to nurture citizens’ demand for health data interoperability.
During the final session of the day, experts Prof. Dr. Jan Baumbach (University of Hamburg), Prof. Dr. Oya Beyan (University of Cologne) and Prof. Dr. André Dekker (Maastricht University) discussed solutions for on-demand access to federated datasets and cloud computing resources and how these can accelerate the digital transformation of health and care. Prof. André Dekker stated that researchers have more data available in federated settings and, therefore, more diversity. However, he mentioned several challenges holding back the federated approach. Among them were a lack of legal requirements and clarity about what involves sharing algorithms, data harmonisation, and the costs of FAIR data.
The final panel speakers agreed that it is necessary to invest further and enhance support from policymakers for a federated future. DHE’s own contribution to federated approaches for enabling the European Health Data Space can be found here.
The day was moderated by Diane Whitehouse (European Health Telematics Association), Carina Dantas (European Connected Health Alliance), Carola Schulz (empirica), Dr. Henrique Martins (DigitalHealthEurope), and Dr. Oliver Zobell (Research Centre Jülich). Dr. Veli Stroetmann (empirica) opened and closed the day.
The Digital Health Europe Summit takes place online from 28 till 30 September and brings together EU policymakers, funders, digital health experts and other stakeholders for inspiring and forward-looking debates. Topics range from real-life transformation through digital health (Day 1), via empowering citizens (Day 2) to scaling up innovation through health data (Day 3).