Global Summit 2022

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 both 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 several 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 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

Welcome session & Opening plenary

Closing session

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.

Registrations

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

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

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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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Event organizers:

col.lab | collaboration laboratory in association withMEDCIDS – Department of Community Medicine, Information and Decision in Health, Faculty of Medicine, University of Porto, i-HD The European Institute for Innovation trough Health Data.

Summit secretariat

MEDCIDS – Faculdade de Medicina da Universidade do Porto
Rua Dr. Plácido da Costa, s/n 4200-450 Porto, Portugal

Jens Declerck

i~HD Data Quality manager

The European Institute for Innovation through Health Data

Email: jens.declerck@i-hd.eu