26 09 16
i~HD members and networked colleagues have been very busy over the last six months, since our inaugural conference in March, taking forward the many threads of activity that we presented on that day in Paris. We have particularly focused on a series of enablers to help to grow confidence and societal trust in the re-use of health data for research and for learning health systems. These and our other areas of work are summarised below.
Learning from health data, for care and for research, has never been more important. We have to do this well, and support those who create and use health data, including patients themselves. Please join us, and help us to co-create the best practices, guidelines and tools to scale up maximising societal value from health data.
President of i~HD
i~HD has commissioned the EuroRec Institute, which has Europe's premiere experience in quality labelling EHR systems, to develop a set of requirements and conformity assessment criteria to assure the trustworthiness of clinical research platforms, especially in relation to their handling of health data. EuroRec will be ready to begin conducting conformity assessment testing by the end of 2016, enabling i~HD to issue a Certificate of Conformity to successful service providers. Through this we hope to enable hospitals and research sponsors to be more confident about joining and using such networks.
i~HD experts across Europe are putting the final touches on a first series of codes of good practice for providers and users of clinical research platforms. The codes draw on prior work undertaken in EHR4CR, and parallel governance initiatives such as the IMI Secondary Use code and the EMIF Code of Practice. These codes of good practice will initially be offered into the post-EHR4CR Champion Programme, in late 2016, and after refinement to other i~HD members running similar clinical research platform networks. They will be accompanied by recommendations for staff training and competence, for personnel operating clinical research platforms at sponsor and hospital sites.
i~HD is working with European experts in data quality to define a set of dimensions, indicators and statistical assessment methods that are especially relevant to the quality of health data when used for research and for organisational learning (learning health systems). Special tools created for this purpose will be offered to our member hospitals to internally assess the quality of their own data and to identify quality gaps. We will work in a peer support way to collate and share data quality improvement strategies, and connect hospitals to each other to collaborate on common strategies.
i~HD is organising an invitation-only networking event for European hospital users of new-generation clinical research platforms. This event will be exclusively open to representatives from invited hospitals, where they will learn about key state-of-the-art topics including privacy protection, information and research governance, data quality improvement strategies and the perspective of patients about the use of health data for research. This event takes place on 9th February 2017, in Brussels. If you have not already received an invitation and you are from a European hospital with an interest in re-using your EHR system for research and organisational learning, please contact us to request an invitation by sending an email to Geert Thienpont.
i~HD has been commissioned to undertake a benefits assessment of the post-EHR4CR Champion Programme. It is working with its founding member organisations EuroRec, empirica and RAMIT, alongside hospital and Pharma members of the Champion Network, to develop the indicators and evaluation methodology. This evaluation will be undertaken during 2017. Although initially an internal assessment, all stakeholders are committed to the open publication of the main findings, potentially as an open access academic journal article.
A first learning point taken from the Champion Programme is the value of growing a community to share experiences.
The Interoperability Asset register that was initially developed during the EXPAND project is now live on our web site. i~HD is starting to collect interoperability assets that are available for reuse, which have usually been developed by recently concluded EC projects. Watch this space!
Recent related EC projects are also being invited to create a permanent summary page on our site, from where we can also offer to host their key deliverables and other results, on their behalf. Have a look at the first few. Contact us if you might wish to take advantage of this - so far free - hosting offer.
The i~HD office, mainly located in Ghent (Belgium), supports our European experts in the further development of the i~HD services.