Milano, Italy
Auditorium Testori, Palazzo Lombardia

September 23rd-24th, 2019

Big Data,
Electronic Health Records and Health Governance

Big Data, Electronic Health Records and Health Governance
Big Data, Electronic Health Records and Health Governance

After the successful conference held in May, we are glad to invite you to the workshop titled “Big Data, electronic health records and health governance”.

The aim of the Workshop is to explore one of the key thematic areas of the Regions4Permed project, which is understanding how big data and digitalisation can support measures to promote health, as well as to reform health systems, easing the transition to new patient-centred care models, and to new integrated care structures.

We will be discussing the potential, the risks and role that Regions can play in the governance process of health data, focusing in particular on the current state of art and the next challenges.

In the Workshop in September we are planning to discuss the topic of Data and health governance with Policy Makers, Representatives of Universities and Research Hospitals, Organisations active in the field of Healthcare from different Regions. The Workshop, structured in parallel sessions, will focus on four areas: 1) Data integration and interoperability, 2) Public and private investments and Public-private partnerships 3) Change management in hospitals (including IT training for doctors, monitoring and management of chronicity) 4) Data Access (to researchers, clinicians and patients).

We would like representatives of Regions, Countries, Healthcare Organizations to present and discuss their policies and practices in their Regions/institutions.

The agenda will be constantly updated on this page

#Regions4PerMed #BigData4Regions #PersonalisedMedicine


Day 1, 23rd September 2019


Registration and Coffee


Host Greetings:

  • Marina Gerini, Fondazione Regionale per la Ricerca Biomedica
  • Regione Lombardia


Regions4permed: aims of the workshop
Gianni D’Errico, Fondazione Toscana Life Science, Project Coordinator


The value of Data and the political responsibility to use it

Peter Kapitein, Inspire2live, The Netherlands


Value of Information analysis (VOI)

Enrico Capobianco, University of Miami, Center for Computational Science


Data Sharing and trust: the Estonian case

Neeme Tõnisson, Estonian Genome Center


Toward Access to at least 1 Million EU Genomes

Tuscany Agenzia Regionale di sanità


Lunch Break

13:45 - 15:30

Parallel Sessions

13:45 - 15:30

Auditorium TESTORI – Policy area 1
Data integration and interoperability

Health data are often organised in large datasets. These sets are often fragmented, and the level of interoperability is currently extremely low. Therefore, part of the challenge is to identify pathways towards a better data integration, in order to better address common health concerns in the future. The organisation, interoperability and valorisation of health data represent a keystone for healthcare sustainability in the long run.

Topics to be discussed:

  • Infrastructural (technology enabling) interventions;
  • Data organisation (eHR and biobanks) and healthcare systems interoperability;
  • Ethical issues related to usability;
  • Privacy and legal interventions to ensure data security and general public acceptance of health data utilization.

Best practices will be presented.

CHAIR: Thomas Neumuth, Regions4Permed AB Member
RAPPORTEUR:  Stefania Boccia, Università Cattolica del Sacro Cuore, Italy
SPEAKER: Luca Augello/John Mason ARIA (Regional Agency for Innovation and Procurement), Italy
SPEAKER: Alonso Sanchez, Navarra Biomed, Spain

Room 34 Arancione (Orange), N4 building, Policy area 2
Investments on big data infrastructures

Significant healthcare improvements can be achieved when data-based innovations are applied to the healthcare system. Regions can support this process through international collaborations and partnerships, identifying needs and common values. Clear goals need to be set within public-private networks to create models of best-practice. This will trigger a shift in the current state of art, encouraging more local relations, cooperation, and collaborations that will facilitate the uptake of innovative healthcare.

Topics to be discussed:

  • Public investments at regional level;
  • Structural funds | S3 Platforms and interregional investments;
  • Private investments to support multiregional investment pipelines;
  • Public-private-partnerships

Best practices will be presented.

RAPPORTEUR:  Maurits-Jan Prinz, European Federation of Pharmaceutical Industries and Associations (EFPIA)
SPEAKER: Michel Van Speybroeck, Janssen Pharmaceutica NV, Harmony Project, Belgium


Coffee Break

16:00 - 17:45

Auditorium TESTORI – Policy area 3
Healthcare organisations in a changing environment

The implementation and use of integrated data science offers healthcare organizations the opportunity to: i) combine traditional (clinical) datasets, including data from the electronic health record, with emerging big data sources, ii) enable better patient management, as well as implementation of continuous patient monitoring and real-time laboratory results. Platforms can enable cost-effective and scalable analytics for the information as key to comprehensive access to health care.

Topics to be discussed:

  • New models for earlier “taking care approach” (enabling prevention and prediction approaches)
  • Continuity of care and management of chronicity
  • Healthcare budgeting reimbursement models;

Healthcare staff and the Challenges of data integration in hospitals and general medical care:
Best practices will be presented.


CHAIR: Elio Borgonovi, Regions4Permed AB Member
RAPPORTEUR: Pritesh Mistry, Royal College of General Practitioners, UK
SPEAKER: Luís Velez Lapão, Global Health and Tropical Medicine, Instituto de Higiene e Medicina Tropical, Universidade Nova de Lisboa, Lisboa, Portugal
SPEAKER: Guido Grignaffini, ASST Vimercate; Luca Merlino, Regione Lombardia, Italy
SPEAKER: Robin Weidemann, University Hospital Carl Gustav Carus Dresden

Room 34 Arancione (Orange), N4 building, Policy area 4
Promoting access to data

Access to health related data either regionally, nationally and cross-border in a secure way and in full compliance with the ethical and legal principles, improves life for citizens and helps innovators find the next generation of digital solutions and medical treatments. Whilst the EU is setting strategies to support eHealth digital services, Regions can accelerate its implementation.

Topics to be discussed:

  • Access to data for researchers to advance clinical research;
  • Access to data for innovators for new and improved solutions;
  • Access to data for citizens to improve self-management, as a new form of patients engagement

Best practices will be presented.


CHAIR: Advisory Board Member
SPEAKER: Antonio Barone ARIA (Regional Agency for Innovation and Procurement), Italy
SPEAKER: Torsten Leddig, Greifswald University, Germany

17:45 - 18:15

Wrap up of the day and presentation of day 2


Day 2, 24th September 2019

Auditorium Testori


Welcome coffee


Report from the parallel sessions


Capacity Building

Best Practice 1 A European Collaboration: 4 Motors of Europe




Auvergne Rhone-Alpes

Best Practice 2 : TBC


Wrap up of the Workshop






Closed event for Interregional Committee, PerMed Hub and Partners: Co-Creation Meeting


End of the Co-creation Meeting