Enriching knowledge and enhancing care through health data
The European Institute for Innovation through Health Data (i~HD), held its inaugural conference and public launch on 10 March 2016, in Paris. The event brought together over 200 experts from across Europe, including health ministries, insurers, the pharma industry, healthcare providers, patient associations, health professional associations, the health ICT industry and standards bodies.

Dipak Kalra, President of i~HD and Georges de Moor, Chair of its Advisory Board, welcomed participants and introduced the Institute to them. They explained that the priorities of i~HD, a not-for-profit Institute, are developing best practices in privacy protection governing research uses of health data, promoting better adoption of interoperability standards and establishing initiatives to improve the quality and beneficial uses of health data.

Participants learned from keynote speaker Gaël Raimbault why enabling better use of health data is a key target of the French Ministry of Health, which is keen to see greater value derived from national investments in ICT, and regards the reuse of clinical data for research as of strategic importance. Pierre Meulien, the Executive Director of the Innovative Medicines Initiative (IMI1), which is investing over 5 billion Euro in public private research projects, emphasised the ambition of improving the affordability and speed of access to innovations for patients. IMI projects are using electronic health records to speed up clinical trials and using big data to discover how to better target innovative therapies to the particular patients who will respond best to them. Its new Big Data for Better Outcomes programme will also work closely with health care stakeholders to help apply new evidence emerging from big data to improve healthcare systems. Participants also learned about Europe´s largest “big data” project in health: the European Medical Information Framework (EMIF, funded by IMI), from its co-ordinator Bart Vannieuwenhuyse 2.

Terje Peetso, policy officer from the European Commission, DG CONNECT, emphasised the importance that the EC places on improving the interoperability of health data, and empowering citizens to play a greater role in their own health care and wellness3. The EC is investing, through its Horizon 2020 programme, in many initiatives to improve information connectivity across health care systems, to provide citizens with great assurances about the privacy protection and trustworthiness of personal health applications and devices, and to tackle the particular healthcare challenges of an ageing society 4. John O´Brien, a former hospital CEO, explained why hospitals need to better value the health data that they collect, and therefore to ensure the ICT systems that they procure are of a quality that can support the organisation to optimise its performance in delivering patient centred care, maximising outcomes as well as business efficiently.

This inaugural conference also marked the parallel launch of a novel European platform to support multi-centre clinical research. This operational platform, the result of the European project EHR4CR (Electronic Health Records for Clinical Research, a recently completed IMI project), connects securely to the data within multiple hospital EHR systems and clinical data warehouses across Europe, to enable a trial sponsor to predict the number of eligible patients for a candidate clinical trial protocol, to assess its feasibility and to locate the most relevant hospital sites 5. The role of i~HD, as a not-for-profit Institute, is to provide independent governance oversight of such clinical research platforms and services, as these expand to connect with multiple hospitals across Europe. Several presentations were given on this theme: Mats Sundgren introduced the EHR4CR platform and its pharma-led adoption programme, complemented by Brecht Claerhout who explained the InSite platform and tools that will be used for this 6. Nikolaus Forgo, Professor of IT Law, explained the new European General Data Protection Regulation 7 and its potential implications for clinical research and the integration of big data. Dipak Kalra and Peter Singleton explained the i~HD governance principles and services that will ensure state-of-the-art in the trustworthy reuse of health data for research. Pascal Coorevits presented the importance of the quality labelling and certification of health ICT products, and how EuroRec will assess the conformity of the new clinical research platform 8.

Also in the conference spotlight were the challenges and state-of-the-art approaches to improving the quality and semantic interoperability of clinical data, which was discussed within a panel chaired by Veli Stroetmann, comprising health ministry (Michèle Thonnet, Jeremy Thorp), health insurance (Christoph Rupprecht), clinician (Robert Vander Stichele) and patient (Petra Wilson) perspectives. The panel emphasised that interoperability is vital to ensure the coordination of care, especially because of increasing comorbidity, with older generation patients having multiple long-term conditions and multiple treatments that can interact, potentially dangerously, unless care providers have the complete picture on their patients. There is a discord between the actors who use health ICT systems to record information, the actors who want to make use of that information, and those who invest in the ICT systems and thereby determine what is purchased, something that a new Horizon 2020 project VALUeHEALTH is investigating 9. There was a consensus among the panellists that today´Bs ICT systems demonstrate poor connectivity and poor patient orientation, and that many applications in use are not particularly friendly to the language and workflows of clinicians and patients. The panellists emphasised the importance of making better use of interoperability standards, and declared that the key actors to drive that adoption are the public authorities and health insurance. They also emphasised that there should be better cooperative design of ICT solutions with end users. The audience were informed that i~HD will play an future role in the development and quality labelling of interoperability specifications, bringing together clinical and research domain experts, with patients, to help ensure that future standards will support patient care, learning health systems and clinical research. It will also be running initiatives to support hospitals with improving the quality of their health data.

Two of the conference speakers specifically represented the views of patients and of society. Petra Wilson explained that patients are increasingly involved in the collection of their own health data, for example through monitoring devices, but do not always have access to their own data. They must be much more involved in how their health data are used to inform decision-making, and in those care and treatment decisions themselves. Mary Baker stressed that society needs to be much more committed to promoting wellness and accelerating the discovery and testing of innovative treatments. Our ageing society is accumulating long-term conditions, and we need to be much more proactive in prevention and early detection. Health data are vital to improving our understanding of disease and the impact on the lives and well-being of patients. Society needs to better trust the security measures that can nowadays be applied to protect privacy, and to recognise the balance in proportionality between safeguarding health data and putting health data to good use.

1 http://www.imi.europa.eu
2 http://www.emif.eu
3 https://ec.europa.eu/digital-single-market/en/dg-connect
4 https://ec.europa.eu/digital-single-market/en/ehealth-and-ageing
5 http://www.ehr4cr.eu
6 https://www.insiteplatform.com
7 http://ec.europa.eu/justice/data-protection/reform/index_en.htm
8 http://www.eurorec.org/services/seal/index.cfm
9 http://www.valuehealth.eu

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