IMIA, the International Medical Informatics Association (http://www.imia.org) hosted the 2012 European Summit on Trustworthy Reuse of Health Data at the Hotel Metropole, Brussels, Belgium on May 14–15, 2012
This Summit brought together over 100 invited European healthcare leaders working in academia, government, public health, industry, or as users, from across Europe. The event was designed as the first step in creating a forum for building consensus on the reuse of health data for public health, patient, and commercial benefit across the European Union (EU). It is intended that this should lead to the development of guidelines on Trustworthy Reuse of Health Data, so as to inform relevant policies, and to align with international initiatives. The ultimate goal of the Summit and subsequent activity is to publish a framework that will continue to encourage the development of the necessary conditions among EU organisations to enable large-scale sharing of data, and of methods and expertise in the meaningful reuse of care records for research and healthcare service development. The format of the event, and future activity, is based in similar work lead by AMIA in the USA, which resulted in a data stewardship framework that was later vetted at the National Committee for Vital and Health Statistics (NCVHS), a Health and Human Services (HHS) advisory committee. This resulted in a 2008 publication by NCVHS/HHS promoting a Data Stewardship model that took the needs of all parties into consideration (1). The Summit was also supported by several organisations and sponsors, as listed on the event webpage.
The event was opened by IMIA President Antoine Geissbuhler (›Fig. 1) and EFMI (European Federation for Medical Informatics) President John Mantas, and the proceedings were co-chaired by Charles Safran, Associate Professor of Medicine at Harvard Medical School, and Past President & Chairman of AMIA and Steve Labkoff, Head of Strategic Programs, AstraZeneca Pharmaceuticals LP.
The Summit interspersed several keynote speakers and a series of interactive discussions and breakout sessions around topics including the development of new business models based on the collection, aggregation, and reuse of health data to benefit academia and other research entities, healthcare institutions, health data aggregators, and technology firms; and exploring and sharing the perspectives of patients, patient representatives, and the governments that are protecting and advancing the needs and rights of their citizens about the use and reuse of health data. A number of case studies were used as a framework to discuss issues including how health data is collected, used, and reused at present, and what kinds of future activities participants viewed as acceptable developments; what kind of restrictions currently prevent data sharing and reuse within Europe; the role of patients in giving permissions for use and reuse of their data; and issues of governance in future developments.
Among keynote speakers, Don Detmer provided a US perspective based in developments since the AMIA-hosted activities, providing what he termed a 'gloomy perspective' on current US privacy laws and other legislation affecting the protection and use of personal data. Nigel Shadbolt, of the Open Data Institute in the UK, provided non-health examples of the ways in which open data sources can be crowdsourced to build apps and develop new, and possibly unexpected, ways of using data.
The presentations from most of the keynote speakers, and from the breakout discussions and panel sessions are available on the Summit webpage
(http://euhealthdata2012.imia.info). Further materials, including video clips, will be available soon.
- Safran C, Rosenbloom M, Hammond WE et al ( Toward a National Framework of the Secondary Use of Health Data: An American Medical Informatics Association White Paper. JAMIA 2007; 14: 1–9.