Strength lies in numbers. Let’s make a powerful impact by joining the dots between all those striving for a better use of data to optimise person-centred health and research. The tangible goal we want to achieve thanks to each attendee’s input: finalise a list of forceful calls to action for European Health Ministries to be presented by a few of us to the nearby eHealth Network meeting during our second day. We will learn of their feedback at the end our conference.
In order to guide the discussion sessions, i-HD will be bringing together leading European projects that have tackled some major health data challenges. You will participate in three of the six sessions (see challenges below). These sessions will be led by European thought leaders who will exchange use cases, insights, success and challenges. DigitalHealthEurope will contribute multi-stakeholder expertise to help shape actionable policy recommendations. The final sessions on Thursday 28th will focus on how EHR systems can be adapted to guide clinicians and patients to manage multimorbidity, starting with lunch-time demonstrations of C3-Cloud project’s clinician and patient solutions.
So be prepared for a very hands-on and interactive think-tank conference!
Calling patient organisations, health professionals, healthcare providers and payers,
research organisations, EHR system vendors and standards bodies
i~HD is explicitly referenced in a recently published experience report on the “Use of EHRs data for clinical research : Historical progress and current applications.” (Amy Harris Nordo, Hugh P.Levaux, Lauren B. Becnel, Jose Galvez, Prasanna Rao, Komathi Stem, Era Prakash, Rebecca Daniels Kush, Learn Health Syst. 2019 Jan 16;3(1):e10076. doi: 10.1002/lrh2.10076. eCollection 2019 Jan.)
Among several other important and interesting entries in the “Background” chapter of the article the readers are reminded of the origin of the “European Institute for Innovation through Health Data” as a sustainable entity emanating from the IMI/EHR4CR project, one of a number of projects supported by the European Commision. i~HD was established with a goal of scaling up “innovations that rely on high quality and interoperable health data.” The authors clarify that there is increased interest in leveraging EHRs’ RWD to accelerate RWE. The challenges with RWD, however, remain the reliability of the data sources, the quality of the data, the cost, the linkage and the integration across sources, the data consistency through application of appropriate standards, and the unclear regulatory guidelines. On the other hand the benefits of reusing EHR data for clinical research studies are numerous and the FDA, HHS/ONC, IHE, CDISC, EU, HL7, IMI, i~HD , Japan's authorities, and others have encouraged the use of EHRs for research. They portend the opportunity to bring new therapies to patients sooner, potentially at a lower cost, and to accelerate learning health cycles—through faster data acquisition in clinical research studies The authors conclude that “with the steady increase in adoption of EHRs around the world, this is an excellent time for all stakeholders to work together and create an environment such that EHRs can be used more readily for research. The capacity for research can thus be increased to provide more high-quality information that will contribute to rapid continuous learning health systems from which all patients can benefit.”
The mission of The European Institute for Innovation through Health Data (i~HD) is to enable, coordinate, and accelerate the efficient development and deployment of interoperable and seamless eHealth solutions and research strategies, towards achieving best practices and sustainable integrated person-centred health care, to optimise health and wellness in Europe, and beyond. It aims to guide and catalyse the best, most efficient and trustworthy uses of health data and interoperability, for optimising health and knowledge discovery.
i~HD has been established to tackle areas of challenge in the successful scaling up of innovations that critically rely on high quality and interoperable health data. It specifically addresses obstacles and opportunities to using health data by collating, developing and promoting best practices in information governance and in semantic interoperability. It is helping to sustain and propagate the results of health information and communication technology (ICT) research that enable better use of health data, assessing and optimising their novel value wherever possible.
i~HD has been formed after wide consultation and engagement of many stakeholders to develop methods, solutions and services that can help to maximise the value obtained by all stakeholders from health data. It supports innovations in health maintenance, health care delivery and in knowledge discovery, while ensuring compliance with all legal prerequisites, especially regarding the insurance of patient’s privacy protection. It unites multiple stakeholder groups to ensure that future solutions serve their collective needs and can be readily adopted affordably and at scale.