Health Data Forum
Global Hybrid Summit 2022

Quality of Health data, a dynamic complexity, a critical factor for catalysing smarter healthcare and efficient research.

Porto's Declaration

This Declaration is the outcome of the Health Data Quality: a Dynamic Complexity conference held in Porto on 17 & 18 November 2022. The first international conference ever held on the topic of health data quality. The conference’s objective was to demonstrate the dynamic complexity of high-quality data, as well as for primary and secondary use. The Porto declaration is the result of an interactive conference with over 400 experts, representing multiple -public and industry stakeholders, including key policy-making bodies such as the European Commission, the WHO and a number of national governments.

Develop and promote data quality standards and labelling

1. Decision makers and data scientists must work together – urgently – on a European standard for data quality labelling for primary and secondary data use, including provenance and FAIR reuse metadata.

2. Multiple healthcare and research funders must be prepared to co-finance the development of these data quality standards, their adoption into labels and products and the upgrade of deployed systems to ensure standardised high-quality, high-value data for all.

Develop and certify digital health products to have data quality by design

3. ICT companies, especially EHR system developers, must build in “data quality by design” so that users find it easy to enter high-quality data and can tell the quality of the data they access and use.

4. ICT companies, especially EHR system developers, must value the quality, reliability, and trustworthiness of the health data their systems create and process, and certify their products against these criteria.

Require data quality labels within all digital health and research products

5. Member States and the European Commission must align their evidence requirements, including data quality requirements, for the approval of digital health innovations within European health systems.

6. Purchasers of digital health products and platforms, including EHR systems, must prioritize the adoption of systems that facilitate and label high-quality health data.

Invest in education and organizational change to improve data quality

7. Health and Finance ministries, health insurers and the data-using industry sectors must align their KPIs to join forces to invest in high-quality data in health-related activity. Furthermore, all stakeholders involved should engage in educating and empowering patients (and patient organizations) and the public to capture their own data to a high quality and to encourage its use for purposes they support.

8. Secondary use stakeholders must urgently support healthcare organizations with the uptake of education and the organizational changes needed to improve data quality.

Develop the multi-stakeholder business case for high-quality data

9. Member States and the European Commission must develop and promote business cases for investment to improve health data quality.

10. Member States and the European Commission must establish co-financing frameworks to share out the necessary investments amongst the data user stakeholders

 Edited by Jens Declerk, Conference Program Manager, i-HD The European Institute for Innovation through Health Data

If you want to adhere to this declaration and add your company logo please contact the i-HD: here.

Call to action

This Declaration calls on all stakeholders to urgently collaborate on agreeing on the standards for data quality assessment, on scaling up data quality labelling of primary and secondary use data and on strategies for shared investments to improve the systems and delivering training to the personnel needed to ensure the best possible health data across Europe.

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About the 2022 edition

It is well recognized by all stakeholders, that health data offers huge opportunities to accelerate research and to improve care. 

  • Patients and clinicians want their health data to be safe, rapid and evidence based.
  • Healthcare institutions and authorities must learn from their data.
  • Public health agencies need reliable data to guide healthcare and prevention programs.
  • Regulators and health technology assessment agencies want to be able to trust real-world evidence in decision making.
  • Research urgently needs greater access to high-quality data to foster innovation.

Value

The value of the massively growing health data volumes to advance healthcare and clinical research is beyond dispute. Although the change to this data-driven environment, this “big data revolution” has not reached its full potential due to concerns related to the quality of health data. Data quality is about having confidence in the quality of the data that you record and the data you (re)use. And the most important condition for trustworthy use and re-use data is obtaining high-quality data. In the healthcare setting, enormous amounts of data are generated at every point of interaction. 

Challenge

 Obtaining high-quality data in this healthcare setting seems evident and straightforward, unfortunately this doesn’t appear to be the case in practice. Data quality is a dynamic complexity, an ever-changing requirement that needs to be redefined over time and over different projects. Because of this complexity, there are enormous challenges to overcome before achieving high quality data. Challenges involving the management and improvement of people, processes, policies, measurements, technologies and standards.

Who should attend

Our goals

The aim of this summit is to demonstrate the importance of quality of healthcare data, how to measure data quality and how to improve it. Whether for primary use or secondary use, data quality is an universal requirement. It is the most important real world data challenges. Data without quality can neither contribute value nor serve any useful purpose.

In addition, the summit will combine the different perspectives of data scientists, healthcare professionals, patients, and governance to find the much-needed consensus for the next generation of healthcare systems.

Program Committee

Summit organizing team

Geert Thienpont (Co-chair)
i~HD, Belgium

Jens Declerck 

i~HD

Joao Fonseca  (Co-chair)

MEDCIDS, Porto University Medical School

Nathaniel (Nathan) Gatpandan

i~HD

Paul Nunesdea (Facilitator)

Health Data Forum

Pedro Cid Ferreira

Digital Health Portugal

Rafael José Vieira

MEDCIDS, Porto University Medical School

Rui Guedes

MEDCIDS, Porto University Medical School

Altamiro Costa Pereira (Co-chair)
Porto University Medical School, Portugal

Alexandre Guedes da Silva

SPEM

Dipak Kalra (Co-chair)
i~HD, United Kingdom

Hanna Pohjonen

Rosaldo Oy, openEHR Ambassador, Finland

George Mathews

Chief Medical Officer, Dedalus North America

Joseline Carías Galeano

Recainsa, Guatemala

Karolina Mackiewicz

ECHAlliance, Finland

Pascal Coorevits
Ghent University, Belgium

Rajendra Gupta
Health Parliament, India

Ricardo Cruz Correia 
Porto University Medical School, Portugal

Sergio Roll
SOBRACIL, Brazil

Vanessa Candeias

Policy Cures Research

Confirmed speakers & moderators

Alexandre Guedes da Silva

President at SPEM - Portuguese MS Association

Andreas Kremer

Co-founder and managing director Information Technology for Translational Medicine

Anke Verheyen

Founder and CEO AV Clinical Research

Anže Droljc

Director Of Business Development at Better

Birgit Bauer

Journalist, Digital Health & Social Media Entrepreneur specialized on healthcare

Carlos Agostinho

Senior Researcher at UNINOVA

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Carlos Luis Parra-Calderón

Member of the SEIS Board of Directors and international scientific representative.

Carlos Sáez Silvestre

Assistant Professor, Biomedical Data Science Lab, Universitat Politècnica de València

Carlos Santos

Chairman of the Board of Directors at Centro Hospitalar e Universitário de Coimbra (CHUC)

Christel Daniel

Head of Data and Research Expertise - Innovation and Data - DSN AP-HP

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Daniel Otzoy García

CEO at Central American Health Informatics Network - RECAINSA

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Dipak Karla

President at i-HD - The European Institute for Innovation through Health Data

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Emmanuel Bacry

Chief Scientific Officer Health Data Hub

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Emmanuel Alexandrakis

Health Economy Global Strategist at WifOR Institute

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Fernando Araujo MD

Executive Director SNS (National Health Service)

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Francesca Maria Risso

Senior Manager Government Affairs Europe at ResMed

George Mathew

Chief Medical Officer, Dedalus North America

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Gozde Susuzlu

Project Coordinator Digital Health and Health Data @European Patients' Forum

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Jana Makedonska

European Health and Digital Executive Agency

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Jesper Kjaer

Director of Data Analytics Centre, Danish Medicines Agency

Joris Wille

CEO at BeWell Innovations

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Joseline Carías

General Manager at RECAINSA Central American Health Informatics Network

Karlien Erauw

Expert ICT & eHealth standardisation .Agoria & co-chair HL7 Belgium

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Karolina Mackiewicz

ECHAlliance (European Connected Health Alliance)

Licínio Kustra Mano

DirectorStrategic Advisor for European Health Data Space at European Commission of Data Analytics Centre, Danish Medicines Agency

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Maes Christophe

<p class="rteBlock">Business Development Officer i~HD</p>

Maria Marques

Senior Researcher at UNINOVA

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Mark Little

Professor of Nephrology at Trinity College Dublin. Trinity Health Kidney Center

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Markus Kaliolla

Project Director at SITRA

Mats Sundgren

Director Health Informatics at AstraZeneca

Miguel Ángel Armengol de la Hoz, PhD

Head of the Big Data Department - Regional Ministry of Health of Southern Spain

Nadir Ammour

Clinical Innovation and External Engagement at Sanofi

Nathan Lea

Trusted Research Environment LeadTrusted Research Environment Lead Cancer Research UK (CRUK) and Information Governance Lead at i~HD

Nigel Hughes

EHDEN - The European Health Data & Evidence Network

Paolo Alcini

Head of Healthcare Data at European Medicines Agency

Pascal Coorevits

Professor of Medical Informatics and Statistics at the Ghent University, Faculty of Medicine and Health

Pascal Verdonck

Professor Biomedical Engineering and Medical Technology at Arteveldehogeschool

Patrick Pavlick

Diagnostic and Informatics Director and US Co-lead for the Capable & Able Network ERG at Sanofi

Paula Blancarte Jaber

Program Manager at International Consortium for Health Outcomes Measurement (ICHOM)

Pedro Duarte

Corporate, External & Legal Affairs Director at Microsoft Corporation

Peter Rijnbeek

Head of the Department of Medical Informatics at Erasmus MC

Philip Taillieu

Founder and CEO at Cascador Health BV

Rajendra Pratap Gupta, PhD

Co-Chair Global Digital Health Summit, Expo & Awards

Ravi Shankar

GIS Head, WHO GIS Centre for Health at World Health Organization

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Rhidian Hurle

CCIO Wales. Medical Director at Digital Health and Care Wales

Ricardo Cruz Correia

President of e-Mais - Movement Association of Health Information Systems, Professor at FMIP, Entrepreneur

Robert Jakob

Team Leader Classifications and Terminologies (ICD, ICF, ICHI) at WHO

Ruben Roex

Attorney in technology, IT, data protection and cybersecurity law at Time.lex

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Sergio Roll

Sociedade Brasileira de Cirurgia Minimamente Invasiva e Robótica (SOBRACIL)

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Seval Akgun, MD, PhD

Chief Quality Officer, TURKIYE Adjunct Professor, University of North Carolina-Pembroke, USA

Tiago Alfaro

Director of the Innovation and Development Unit of the Coimbra Hospital and University Center

Tiago Taveira Gomes

Founder & CEOFounder & CEO at MTG and Sigil Scientific Enterprises

Tom Goffin

Professor Health Law at Ghent University

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Tomaz Gornik

CEO at Better and co-chair of openEHR International

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Vanessa Candeias

Policy Cures Research & Health Data Forum Global Ambassadress

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Yiannos Tolias

Senior Emile Noël Global Fellow at NYU School of Law

Zoi Kolitsi

Digital Health Strategist at the European I~HD Institute of Innovation through Health Data

Welcome session & Opening plenary

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Altamiro Costa Pereira

Dean Faculty of Medicine Porto University & CHAIR

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Paul Nunesdea, PhD CPF

Health Data Forum Firestarter

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Ricardo Jardim Gonçalves

Full Professor, Director of UNINOVA

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Geert Thienpont

Director of The European Institute for Innovation through Health Data

Jens Declerck

Data Quality Manager at The European Institute For Innovation Through Health Data

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Vanessa Candeias

Policy Cures Research & Health Data Forum Global Ambassadress

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Sofia Nogueira da Silva

President of the Portuguese Health Regulatory Authority

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Rui Santos Ivo

President of INFARMED, I.P., National Authority of Medicines and Healthcare Products

Francisco Rocha Gonçalves

Head of Market Access, Public Affairs and Trade at Sanofi

Closing session

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Altamiro da Costa Pereira

Dean of the Faculty of Medicine University of Porto

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Sara Cerdas

Member of the European Parlainent

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Sandra Gallina

Director-General Health and Food Safety European Commision (in representation)

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Pedro Ramos

Madeira's Regional Minister of Health and Civil Protection

Steve MacFeely

Director of Data and Analytics WHO

Some of the interventions in the closing section will be in Portuguese with English simultaneous interpretation.

Our program schedule

Contact us here to receive a PDF copy of the latest program schedule.

Experience Portugal essential

The city of Porto and the North of Portugal offer the essence of Portugal and we will offer a number of optional social activities you can profit from, including our VIP summit dinner which is not included in the registration fee but can be purchased separately. Please check the registration details for more information.

Feel the call

The World of Wine Museum is an immersive museum that offers 7 unique experiences from Wine to Cork and Chocolate Story reflecting the history of the world’s globalization and how local natural resources had a co-creating effect on these journeys. 

Pre-summit events

You can also attend our optional tutorials on the 16 November and two online courses about openEHR.

openEHR

What is a modular openEHR-based electronic health and social care record? How does it differ from a traditional model? How does the vendor and technology neutral openEHR data model look like? We offer 2 courses to learn more about openEHR.

The openEHR Awareness course is meant for any role and there is no need to have prior knowledge about openEHR.

Introduction to openEHR Clinical Modelling Course will familiarize you with the openEHR clinical modelling approach and the key tools used to develop openEHR data models.

The cloud-based eLearning environment will be open from the moment you register, and will close 6 months after the Summit (20.5.2023). The sooner you register the longer you will benefit from this training.

 

 More about openEHR

Hanna Pohjonen, eHealth Management Consultant, Founder at Rosaldo Oy, PhD & openEHR Ambassador Finland & co-chair in openEHR Finland and openEHR International Education Program is our course leader.

Summit organizers

Premium sponsor

Gold sponsor

Bronze sponsor

We are thankful for the support of the following summit members whom you can reach out on LinkedIn:

Summit corporate members

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Mitchell Silva, PhD

Co-founder & Project Lead Esperity & Patient Centrics

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Anne Li

edenceHealth Product Manager

Lars S. Halvorsen

Managing Partner at edenceHealth NV

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Judith (Angelique) Stout

Judith (Angelique) Stout at Deloitte

Summit civic members

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Dr. Emmanuel Alexandrakis

Health Economy Global Strategist at WifOR Institute

Marta Passadouro

EITHealth InnoStars Ecosystem Lead Portugal

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Nicky Van Der Vekens

Scientific Researcher and Clinical Data Manager at AZ Maria Middelares

Summit supporting members

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Enadio da Costa Moraes Filho

MD, Health Promotion Consultant

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Guido Santos

Co-Founder & CEO at genesis.studio

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Javier de Oca

Co-Founder & CEO at IOMED Medical Solutions,

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Luís Pinto

CIO - Chief Intelligence Officer at genesis.studio

Margarida Mateus

Hospital Pharmacist, Medical Stakeholder Engagement, Ph.D. student in Health Data Science

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Olena Chaban

Lawyer & Linguist,, Honorary Research Fellow at the Faculty of Laws

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Octavian Valcov

Founder at EasyPlan.pro

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Vera Moura

Innovation Lead at EIT Health InnoStars

Strategic Partners

Event Partners

After your registration you would be able to introduce yourself and interact with other participants in our summit’s virtual space powered by Howspace™.

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