i~HD Porto Declaration on Health Data

Find out about the 10 action points formulated after the two-day conference in Portugal as a call on all health data ecosystem stakeholders to ensure the best possible health data for Europe.

A TWO-DAY HEALTH DATA CONFERENCE

From the organising and programme committees, our warmest thank you for your participation

We look forward to seeing you again in our next conference.

A joint conference organised by

All roads led to Porto for health data enthusiasts

More than 200 participants sat down in carefully curated sessions focused on the latest topics in health data quality, its challenges and incentives.

It is well recognised 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 programmes.
  • 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 of 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.

Goals

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

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

Strategic partners

Organising Committee

Programme Committee

Paul Nunesdea (facilitator)
Health Data Forum

Geert Thienpont
i~HD

Joao Fonseca
MEDCIDS, Porto University Medical School

Pedro Cid Ferreira
Digital Health Portugal

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

Dipak Kalra
i~HD, United Kingdom

Jens Declerck
i~HD, Belgium

Alexandre Guedes da Silva
SPEM

Hanna Pohjonen
Rosaldo Oy, OpenEHR Ambassador, Finland

George Mathews
Chief Medical Officer, Dedalus North America


Pascal Coorevits
Ghent University, Belgium

Joseline Carías Galeano
Recainsa, Guatemala

Karolina Mackiewicz
ECHAlliance, Finland

Rajendra Gupta
Health Parliament, India

Ricardo Cruz Correia
Porto University Medical School, Portugal

Sergio Roll
SOBRACIL, Brazil

i~HD