Health-RI Conference 2022

6 October 2022, Jaarbeurs Media Plaza, Utrecht

 

Parallel sessions:

1. International data and sample sharing – in the Netherlands, Europe, and beyond (moderated by Egge van der Poel) POLAR

Speakers

• Pieter-Jelle Visser, AmsterdamUMC 
• Morris Swertz, UMCG 
• Vincent Sprengers, RIVM/TEHDAS representative 
• Nigel Hughes, Janssen & Industry lead EHDEN project
• Gerrit Meijer, CSO Health-RI, Head Department of Pathology NKI 
• Miranda Schram, Maastricht University

Health-RI has identified numerous obstacles hindering the sharing of health data and biological samples in a national context when it comes to research and innovation. A joint task force of Health-RI partners together with the Dutch Ministries of Health, Economic Affairs, and Science, aims to systematically address those obstacles. When sharing data and samples across international borders researchers will not only face similar challenges but also various new ones. Still, many international research consortia are already successfully sharing their data and samples. This session will focus on those projects, the obstacles met in practice, and highlight some best practices to successfully overcome the data and sample sharing hurdles. Finally, a panel of experts will discuss current and future solutions to improve international sharing of data and samples. We will also have a first discussion on the opportunities and challenges raised by the European Health Data Space (EHDS) as now officially published as a draft EU regulation. What does it mean for us when sharing data and samples internationally? How can we benefit in the future? 

2. Unfolding a learning healthcare system - how to inform, involve, and interact with citizens? (moderated by Nicole Plas) GLOW

Speakers

• Eric Vermeulen, Health-RI MAR/strategic committee/VSOP 
• Larissa de Lannoy, Zelfstandig patiëntvertegenwoordiger 
• Ildikó Vajda, Senior Adviseur Digitale Zorg Patiëntenfederatie Nederland 
• Wannes van Hoof, Projectverantwoordelijke TEHDAS, Sciensano

Without trust, support and involvement of citizens, in particular patients, it will be impossible to work towards a learning healthcare system, including the required data infrastructure. Accessible information is needed about why the use of personal data is crucial, and what this entails exactly. Also, interaction with citizens about various interests, needs and perspectives is important. Continuous involvement of citizens can aid to guarantee that societal perspectives are taken into account, and, with that, can improve short- and long-term outcomes. However, what to communicate, how and when; and how to facilitate interaction and meaningful involvement, is not evident nor straight-forward. It requires strategy, well-suited methods, and shared responsibility. This session will provide (best) practices and opinions from experienced experts and will facilitate discussion about the necessary next steps to take. Representatives from all stakeholder groups are invited to join, naturally including citizens and patients (advocates).

3. Building Blocks for an integrated Health & Research Data Infrastructure – moving towards a learning healthcare system (moderated by Sylvia Veereschild) SPARK Fully booked

Speakers

• Patrick Kemmeren, Princess Máxima Center for Pediatric Oncology
• Jet Zoon, Princess Máxima Center for Pediatric Oncology

Building an integrated health data research infrastructure accessible for researchers, citizens, and care providers to facilitate the optimal use of knowledge, tools, facilities, health data and samples to enable a learning healthcare system. What are the building blocks needed to accelerate sustainable and affordable personalized medicine and health? What elements are already available and what still needs to be tackled? What solutions already exist in healthcare and in research?

In this interactive session, we will bring together multiple stakeholders to give their input and feedback on the suggested building blocks for an integrated health research infrastructure in the Netherlands. This includes the architecture, biobanks & collections, services, FAIR/people infrastructure as well. At the end of this session, we jointly identify potential missing pieces of the integrated health research infrastructure puzzle.

4. Improving conditions for a healthy life with health data - from regional initiatives to a national learning curve (moderated by Desiree Hoving) FLASH

Speakers

• Chantal Steegers, Public Policy & Affairs manager, central Health-RI HUB 
• Natasha Maurits, UMCG, representative on behalf of Heads of nodes 
• Jochen Mierau, Scientific director Lifelines institute 
• Jildau Bouwman, Senior scientist and programme lead Digital Health TNO 
• Leone Flikweert, CEO Health-RI HUB 

The importance of improving conditions for a healthy life and thus preventing diseases is widely recognized by stakeholders in the health sector. Health-related data provides essential insights for this purpose. They for example hold the potential for data-supported design of (regional) health policy. Health-RI embraces the importance of (re-)using data for improving healthy living conditions. This session therefore intends to contribute to an overview of what this emerging field looks like and how it is organised locally as well as nationally. We will explore what the role of Health-RI and other stakeholders could be in moving forward towards thriving data-driven health-promotion and connecting this to the development of a national integrated health data infrastructure. Together with the UMCs, Health-RI has already successfully set up a network connecting the regional level within the national health data infrastructure: the Regional Nodes . In this session we like to reflect on this success and evaluate what is still missing and which extensions on a regional level in combination with an (inter)national set of rules could be relevant. The field of innovative regional initiatives improving conditions for the health of people is diverse and growing. This can be a good starting point for moving from regional initiatives towards a national framework for this purpose. A plethora of initiatives such as AchterhoekMonitor, DataFriesland, PHDNL and ODISSEI are currently working on concrete projects proving the added value of collecting and making use of health data as well as creating national standards and operational procedures for data (re)use for this purpose. The promise of these show cases is to move forward towards a situation in which such initiatives can thrive and grow and really create a large-scale impact.