The organising committee of the joint event would like to thank all attendees and participators for their great collaboration, turning it into a big success.
On behalf of i~HD, EMIF and the Research Institute of Hospital Universitario 12 de Octubre we are delighted to report that our joint event was a big success. Well over 250 delegates from many different stakeholder communities participated during these two days in Madrid. After warm welcome speeches from our hosts, we had the pleasure of starting off the first day’s presentations with talks from representatives of the Spanish and Estonian health ministries, who elaborated on the importance of reusing clinical data for improving health care and clinical research on national and European scale. Ain Aaviksoo , Deputy Secretary General for E-services and Innovation from the Ministry of Social Affairs of the Republic of Estonia, closed off the introductory session by emphasising that we must provide feedback to patients when their clinical data has been used, showing them the research results and clinical care improvements that their data has contributed to.
The next session, elaborating on value-based and outcomes-based care, presented diverse points of view from health insurance, pharma, health technology assessment and international policy. The speakers discussed the goals, and the challenges which will need to be addressed, in order to achieve outcomes-based health care systems on a wide scale. Policy makers were encouraged not to be preoccupied with short-time savings at the expense of health care improvement and financial benefits in the long run. Mary Baker , the chairperson, ended the first session with the profound words: ‘We should stop talking about the cost of health care and start talking about the investment of health in the long run.’
The next session introduced the i~HD Network of Excellence for hospitals, and presented the approaches being undertaken by three hospitals to enable the transformation to value based care and to scaling up the capability to undertake clinical research. These included establishing cross-disciplinary teams and supporting their collaboration, the development of a data warehouse to hold data to inform healthcare quality improvements and to conduct research.
After lunch, the focus moved to the patient perspective regarding reusing health care data and how they can play a more active role in the ecosystem of clinical data. The audience learned about the mission and achievements of the European Patients’ Forum. The findings of citizen juries held in the north of England were presented as an innovative way of understanding the views of society members towards the reuse of their health data. The key to achieving an ecosystem of health data use is to develop principles and solutions that are considered trustworthy by patients and by health care professionals. A patient representative powerfully rounded off the session stating “In the end, it’s all about trust.” During the panel discussion the data ownership and decision making role of patients was explored. The contributions of patients as data donors was also considered.
i~HD will start working on a repository of evidence that shows the benefits of reusing clinical data in an interoperable framework and we will also examine possible good practice models for patients to become data donors
During the final session of the first day the realisation of better quality health data was examined critically. The different dimensions and aspects of data quality were stressed, making it clear that the way EHR-systems and clinicians have important roles in capturing good data.
During the closing session of day one, Dipak Kalra , President of i~HD, announced the intention to seek funding for two new i~HD initiatives: “i~HD will start working on a repository of evidence that shows the benefits of reusing clinical data in an interoperable framework. We will also examine possible good practice models for patients to become ‘data donors’. We will communicate to patients the benefits of sharing personal health data for clinical research and healthcare improvement. We will need all stakeholders to come together to help us to achieve these objectives.”
Our meeting host Agustìn Gómez de la Cámara closed the first day with a reflection of key points that had surfaced throughout the day.
After this first enlightening day, we can conclude that there is a complex interplay of different components, which need to be assessed and improved to facilitate the larger scale reuse of data, with respect to patient privacy, workload of clinicians, ways of governing the reuse of data for clinical research and for improving health care.
The second day of the conference was hosted by The European Medical Information Framework (EMIF*). The talks focused on the use of real-world (big) data for research. Bart Vannieuwenhuyse, EMIF project co-ordinator, introduced the audience to the latest EMIF-developments, like a common technology and governance framework, their online platform for identification, assessment, access and (re)use of health data between clinical organisations and research institutes. The EMIF-speakers further elaborated on their existing and ongoing research on Alzheimer’s Disease and understanding obesity, which has been realised using this framework. The public learned about the EMIF platform and its internal semantic harmonisation mechanisms. The EMIF ethical code of practice was explained, and the audience heard about the future possibilities for real world data research that could use the EMIF platform: new therapeutic areas such as rheumatoid arthritis, and the inclusion of patient generated data.
The second day of the conference ended with a closing statement during the panel discussion by Michel van Speybroeck , Director of Data Sciences at Janssen, again accentuating the ultimate goal of realising the value from health data, saying that the ultimate objective is all the hard work results in improved health outcomes for everyone, realising a greater benefit for patients.
After these two conference days, it is fair to conclude that although there has already been a lot of progress regarding the realisation of a ‘health data ecosystem’ there are a lot of opportunities for improvement to be worked out and delivered.
A special thanks for our sponsors: Janssen Pharmaceuticals, Sanofi & RAMIT aisbl for making this conference possible, but also a special thanks for all attendees for being an enthusiastic audience and (hopefully) spreading the insights they have gained throughout these two days.
*EMIF (European Medical Information Framework)
The EMIF project is a five-year project and during this time it will develop common technical and governance solutions and improve access and use of health data. To this aim, a common Information Framework (EMIF-Platform) will link up and facilitate access to diverse medical and research data sources. To ensure immediate applicability, the EMIF project includes two specific therapeutic research topics that will help guide the development of the Information Framework: the onset of Alzheimer’s disease (EMIF-AD) and metabolic complications of obesity (EMIF-Metabolic). EMIF receives support from the Innovative Medicines Initiative Joint Undertaking (IMI-JU) under grant agreement n° 115372, resources of which are composed of financial contribution from the European Union's Seventh Framework Programme (FP7/2007-2013) and the European Federation of Pharmaceutical Industries and Associations’ (EFPIA) in kind contribution.