Enriching knowledge and enhancing care through health data

Annual Report 2017


2017, a year of expansion

i~HD has expanded significantly during its second year. We are pleased to present you a summary of our activities during 2017 in this annual report, and our plans for 2018 and beyond.

In February 2017, we launched the i~HD Network of Excellence, initially for hospitals. The launch conference in Brussels was attended by over 50 hospital participants from across Europe who are keen to accelerate their use of Electronic Health Records to improve their quality of care, as Learning Health Systems, and to scale up their participation in research. We formed a multi-stakeholder steering committee which has guided our ongoing mission with hospitals, in areas such as data quality improvement and the assurance of trustworthy privacy protection. It has shaped our second annual hospital event which was held in March 2018. We can see a growing interest among hospitals to improve the quality of their data, and the electronic health record systems in which it is captured and used. This will bring benefits to all and will especially improve patient outcomes.

Our Data Quality Task Force has met frequently and held special hospital workshops during 2017. They have formalised the data quality indicators that are most important in making better use of health records for learning, and the strategies that hospitals can adopt to improve their data quality. This task force has progressively matured these resources into a Data Quality Seal and improvement service that is being launched in 2018, initially for hospitals. During 2018 we will expand our Network of Excellence to include general practices.

During 2016, another i~HD Task Force developed a Quality Seal for Clinical Research Platforms (QS4RP). This seal was launched in early 2017, and a first research platform service provider was formally assessed and has been awarded that seal. The QS4RP formally tests the company and the platform product to ensure that it provides robust privacy protection and trustworthy use of electronic health record data in a research context. We are in discussion with other research platform providers who are considering the QS4RP assessment and seal.

We have finalised our information governance principles and standard operating rules, and we are now working with different stakeholders to explore how we can best promote consistent and high-quality trustworthy practices across Europe, in the re-use of health data for research.

Patients are central to our mission, and we are pleased to have formed a working in partnership with the European Patients’ Forum (EPF), and other patient representatives. We are collaborating with them to scale up engagement with patients and the promotion to patients and to other stakeholders of the importance of making better use of health data, and ensuring that this is always undertaken in respectful, trustworthy and societally beneficial ways. The centrality of patients to this mission surfaced strongly during our annual conference in Madrid, in September 2017. Around 250 people attended this event, held jointly with the EMIF project, which also focused on the importance of clinical and patient outcomes, and introduced the audience to the concept of value-based care. This topic has now become a complementary important mission for us, and we are pleased to have formed a working partnership with ICHOM, with whom we held our March 2018 hospital event.

Our ambition in the year ahead is to scale up the ways in which we support healthcare organisations to collect and make better use of high-quality health data and to grow our relationship with patient organisations to promote the value of research.

We will work across our industry stakeholders to promote and scale up the value they can achieve from real-world health data, and start to grow a library of success stories and approaches that demonstrate that value. We are also pleased to announce a new joint project with EFPIA and ICHOM, starting in 2018, to define the multi-stakeholder success conditions and evidence in favour of value-based healthcare. This will help us in guiding hospitals on collecting high quality EHR data to improve their outcomes. i~HD is also starting to grow its portfolio of European research projects, and we are actively participating in new grant proposals.

We are very grateful to our sponsors and members, whose financial contributions through membership and in kind support, have enabled us to grow so substantially over the past year and to continue our mission in the year ahead. We are grateful to the many experts who contribute to our task forces, and to our office staff who have enabled i~HD to run efficiently, to hold successful and well appreciated events, and to have a great website and communications material.

We look forward to an exciting 2018, in which we continue to scale up achieving great value from health data for the benefit of all in society.

Download the Annual Report.

Professor Dipak Kalra

Geert Thienpont
Managing Director

Published on: 22 June 2018