Enriching knowledge and enhancing care through health data

Annual Report 2016

We are pleased to present our annual report for 2016, which describes our progress since our official launch at the inaugural conference in March 2016, a year ago. 

i~HD has accomplished a great deal. We have set in place several initiatives that are helping to promote a trustworthy ecosystem for reusing health data for research and learning health systems, as well as improving the quality of that health data. These especially focus on information governance, such as codes of practice, standard operating rules, conformance criteria for clinical research platforms, and plans for establishing an information governance board next year. We have also made great progress in establishing the dimensions of data quality that are most important for using health data for learning, and understanding the success factors for improving data quality. i~HD has been commissioned to undertake an evaluation of the post-EHR4CR Champion Programme, the methodology for which has now been developed.  We have implemented a register for quality labelling and publicising interoperability assets. This report presents a summary of these initiatives, the teams of experts who are working on them, the achievements made this year and the plans for next year. 

Our work has been possible through a dedicated office team, led by Geert Thienpont who has acted as the i~HD CFO but actually does much more than this to run our institute smoothly and efficiently, and to help us to develop new opportunities. We have a great web site and a growing library of content showcasing our activities and events, and now with a new area to promote the reusable results of EC projects. I am grateful to the dedication and commitment of our team, especially given the formative nature of i~HD which required each of them to be creative and agile in the contributions they have made.

We are also very grateful to the many experts who have contributed their time and state-of-the-art thinking to our different initiatives. They are listed against the different activities they have contributed to, and I look forward to also working closely with them in the year ahead. Since i~HD deliberately has a small fixed personnel base, our experts are our life blood, and we intend to grow this network in 2017. The success of i~HD lies in creatively fusing this multi-stakeholder expertise to generate solutions that are greater than the sum of their parts. 

We have been fortunate in our memberships, which have in 2016 particularly targeted pharma and scientific associations. Their membership fees and their enthusiasm and in-kind support have enabled us to achieve a lot over the past year. Next year we will be growing our membership by targeting hospitals, patient associations and other industry sectors, to help balance our perspectives as well as to grow our income. We look forward to learning of the outputs that these stakeholders would like us to additionally deliver, towards our achieving overall mission.

Now that we have become firmly established, with a clear set of activities and emerging results, we are also well placed to form richer strategic partnerships with other organisations operating in our ecosystem. We have already forged good working relationships with some, and I look forward to the year ahead as an opportunity for us to grow a network of networks with these other organisations.

We were founded at the intersection of multiple European projects each of which had aspirations for a not-for-profit Institute, which we have become. There are still ambitions and visions that we have yet to tackle, and we will be scaling up our activities and our connectivities so that we can achieve even more in the years ahead.

Our ambition is for great health data to be captured, shared and used in trustworthy ways by all stakeholders, to enable better health for all citizens. Our mission is to eliminate the barriers, to develop the enablers and to drive the success factors to achieve that ambition.

Professor Dipak Kalra

Geert Thienpont
Managing Director