Enriching knowledge and enhancing care through health data

Annual Report 2018


2018, a year of growth and collaboration

2018 was a whirlwind year for i~HD. Among many successes, we launched our Data Quality Service
for Hospitals (DQS4H). We have established a closer working relationship with European organisations
from different stakeholders. Amongst these we want to highlight patient organisations such as the
European Patients’ Forum (EPF) and the European Multiple Sclerosis Platform. We have started new
projects with the European Federation of Pharmaceutical Industry Associations (EFPIA) and been
successful in new R&D grants from the Innovative Medicines Initiative (IMI). We have held excellent
conferences attended by many different health, care and research stakeholders.

Following consultation with hospitals, partnerships with experts across Europe and extensive testing
of the methodology, the Data Quality Service has been developed, formalised, piloted at a hospital in
Barcelona, and officially launched at our annual conference in November. We are now promoting this
to European hospitals and will also put this service into practice with hospitals through EU and EFPIA
sponsored projects.

In the year of the European General Data Protection Regulation (GDPR) i~HD created a GDPR Task
Force in response to the challenges experienced by our members and stakeholders in determining the
right approach to GDPR compliance when reusing health data for research or as part of the Learning
Health System. We have developed training materials and will next establish an observatory of
emerging good practices in GDPR compliance.

We held a successful hospital workshop in Paris, in March focusing on health outcomes, especially the
outcomes that matter most to patients. Our Annual Conference in Gothenburg, in November,
showcased the value of health data for research and for Learning Health Systems to a large multistakeholder
audience. i~HD has been invited to present its mission at numerous other international
conferences and workshops. We have been invited to run dedicated tracks in conferences in Finland,
Sweden and Belgium during 2019.

It is important for i~HD, and to our members, that we engage strongly with patients and involve them
in all that we do – since health data is about them and will increasingly be created by them. Early in
2018 we announced alignment with the Data Saves Lives campaign and Twitter hashtag. We are now
delighted to be poised at the end of 2018 to be in collaboration with the EPF and EFPIA in the
development of a new public portal and creation of an online public community to convey the value
of research using health data. This will also adopt the brand name #DataSavesLives.

Given our growth, and stronger financial position, we are ready to now enlarge the i~HD Office team.
We will be recruiting an Office Manager and Data Quality Analyst in early 2019.

A huge thank you to all of our Members, whose support has enabled us to already do so much in our
formative years, to our many Task Force experts, and to the i~HD office team who keep us running
smoothly and organise great conferences.

We are all looking forward to a successful year ahead.

Download the Annual Report.

Professor Dipak Kalra

Geert Thienpont
Managing Director

Published on: 26 January 2020