Enriching knowledge and enhancing care through health data

Agenda of the i~HD & EMIF joint conference 2017

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  Thursday 21st September 2017
Welcome by our hosts Prof. Jesús Fernández Crespo, Director General of the National Institute of Research, Carlos III
Dr. Joaquín Arenas Barbero, Director, Health Research Institute, Hospital 12 de Octubre
Welcome and introduction to i~HD Dipak Kalra, President of i~HD
Importance of secondary use of clinical data in Spain´s National Health System Arturo Romero Gutierrez, Spanish Ministry of Health, Social Services and Equality
Opening address Ain Aaviksoo, Deputy Secretary General for E-services and Innovation, Ministry of Social Affairs of the Republic of Estonia
Towards value based outcomes based care
Chair and Q&A moderator: Mary Baker
  introduction of the session and to Mary Baker Dipak Kalra, President of i~HD
  Health insurer perspective Christoph Rupprecht, AOK – Die Gesundheitskasse Germany
  Policy perspective Daniel Furby, Foresight International Policy and Regulatory Advisers (FPIRA)
  Outcomes-based healthcare and the pharmaceutical industry Thomas Allvin, Director Strategy and Healthcare Systems, European Federation of Pharmaceutical Industries and Associations (EFPIA)
  Outcomes-based healthcare: a health technology assessment (HTA) perspective Jacoline Bouvy, Scientific Adviser, Research and Development, National Institute for Health and Care Excellence (NICE)
  Discussion moderated by Mary Baker (online questions from the audience via the conference app)
COFFEE BREAK
Towards Learning Health Hospitals
Chair and moderator: Giuseppe Banfi
  12.05

Presenting the i~HD NoE mission and steering committee

Giuseppe Banfi, General Director, Fondazione Centro San Raffaele
  12:15 Challenges in improving care pathways through health outcomes measurement. Experiences of value based health care at Uppsala University Hospital Morten Kildal, Lead for value based healthcare, Uppsala
  12.30 Using EHR data for research purposes - experiences with a Clinical Data Warehouse platform at Hannover Medical School Svetlana Gerbel, Medizinische Hochschule Hannover
  12.45 Hospital experience in the use health data for improvement and research Pablo Serrano Balazote, Director de Planificación, Hospital Universitario 12 de Octubre
LUNCH and visit to the info booths

Patient perspectives on health data

  14:00 Patient perspectives on reusing health data for research Juan Fuertes, Board Member of the European Patients Forum (EPF), and Access Manager at Pulmonary Hypertension Association Europe
  14:15 Citizens’ Juries on the reuse of health data Mary Tully, University of Manchester
  14.30 What do we desire? Nathan Lea, Senior Research Associate at the UCL Institute of Health Informatics
Panel discussion
Chair and moderator: Diane Whitehouse
  14:45 Introduction of the session and to Diane Whitehouse Dipak Kalra, President of i~HD
  14:50

Panel Question: How do we agree and deliver the optimum levels of patient control over uses of their health data?

Discussion moderated by Diane Whitehouse
(online questions from the audience via the conference app)

  • Juan Fuertes, Board Member of the European Patients Forum (EPF), and Access Manager at Pulmonary Hypertension Association Europe
  • Mary Tully,
    University of Manchester
  • Mitchell Silva, patient representative
  • Nathan Lea,
    Senior Research Associate at the UCL Institute of Health Informatics
  • Miquel Angel Mayer, Universitat Pompeu Fabra, Barcelona
COFFEE BREAK

Towards better health data

  16.00 Data quality: summary of the i~HD data quality assessment methods and improvement strategies Pascal Coorevits, The EuroRec Institute
Carlos Sáez, Senior Researcher, Universitat Politècnica de València
  16.25 Interoperability: the eStandards Roadmap Catherine Chronaki,  eStandards Project co-ordinator
  16.40 Key success factors for good looking data Sara Cazzaniga, Senior Manager, Janssen Italy
Oriana Nanni, Director of Biostatistics and Clinical Trial Unit, IRST/Meldola
  17.00 Introduction to EMIF and day 2 of this conference Bart Vannieuwenhuyse, Janssen, European Medical Information Framework (EMIF) project co-ordinator 
  17.10 Some key messages from our host Hospital and Research Intstitute Agustín Gómez de la Cámara, Assitant Professor. Head, Clinical, Epidemiological and Health Services Research, Hospital Universitario 12 de Octubre
Wrap up of day 1 by Dipak Kalra, outlining how i~HD responds to today’s topics and challenges & opportunities

Invited dinner: will be organised in the Novotel hotel Madrid Center (i~HD hotel offer) where most of the participants will stay.

 

Friday 22nd September 2017
09.00 Introductory Welcome
  • The European Medical Information Framework: development, progress, and showcasing results
    Simon Lovestone, Professor of Translational Neuroscience, University of Oxford, UK &
    Bart Vannieuwenhuyse, EMIF project co-ordinator, Janssen, Belgium
09:15 Research Use Cases – what have we learned?
Simon Lovestone, Professor of Translational Neuroscience, University of Oxford, UK
  • Metabolic
    Bart Vannieuwenhuyse, Janssen,  European Medical Information Framework (EMIF)
  • Alzheimer’s Disease
    Pieter Jelle Visser, VU University Medical Center
  • Cross Topic
    Peter Egger, Senior Director, Real World Evidence and Epidemiology, GSK, UK
COFFEE BREAK
11.30 New opportunities for scaling up big data research
Dipak Kalra, President of i~HD
  • The European Research Arena – A Study
    Tine Lewi, Janssen & Omer Saka, Deloitte
  • Citizen Generated Data
    Alison Bourke, QuintilesIMS Real-World Insights
  • The trustworthy scaling of big data research
    Dipak Kalra, President of i~HD
LUNCH and visit to the info booths
14.00 Data Harmonisation & Novel Data Reuse
Peter Rijnbeek, Assistant Professor, Erasmus University Medical Center, The Netherlands
  • Observational Medical Outcomes Partnership (OMOP), Common Data Model (CDM) and Observational Health Data Sciences and Informatics (OHDSI)
    Peter Rijnbeek, Assistant Professor, Erasmus University Medical Center, The Netherlands
  • EMIF and Data Custodians experience with
    Observational Medical Outcomes Partnership (OMOP), Common Data Model (CDM)  mapping in Europe
    Michel Van Speybroeck, Director of Data Sciences, Janssen, Belgium
  • Working with cohorts: Switchboxes & Knowledge Objects
    Rudi Verbeeck, Senior R&D Manager, Janssen, Belgium
  • Placebo Data as a surrogate for RWD
    Gurparkash Singh, Manager, Janssen Research and Development, US
    Peter Egger, Senior Director, Real World Evidence and Epidemiology, GSK, UK
COFFEE BREAK
16.00 Panel Discussion
Nigel Hughes, Scientific Director of Real World Evidence, Janssen, Belgium & Selected Speakers
  • What have we learned from EMIF in support of health data research?
  • What is the future beyond EMIF?
Closing Statement & End
Simon Lovestone, University of Oxford & Bart Vannieuwenhuyse, Janssen,  European Medical Information Framework (EMIF)