04 July 2017
- Healthcare

On the 7th June, EFA Isabel Proaño presented at the event "How to create an ecosystem which unlocks the full potential of health data?", organised by the European Federation of Pharmaceutical Industries and Associations (EFPIA). During the event, panellists discussed the findings of a new commissioned Rand study on the value of health data.

The event served also to debate on the future implementation of the EU Data Protection Directive that, although does not refer to health data specifically, could become a framework for the exploitation of EU citizens’ health data

Isabel data sharing

Data protection, data privacy and health data are cornerstone issues for patients’ lives.  Health data can make a difference in developing disease knowledge as the analysis of aggregated health data can lead to better care and quality of life for patients. However, the use of health data needs to respect the boundaries of individual data privacy and protection of rights to avoid negative impact on the lives of patients.

EFA’s Isabel Proaño participated in the round table to bring the patient perspective and stressing the points identified by the European Patients Forum, she stated that patients’ worries about the use of personal health data are legitimate. Many, especially those living with chronic diseases, fear discrimination in the workforce or medical insurance if by accident their health data would be disclosed. This however should not be taken as a barrier in a sense that patients want that their data benefits future and potential patients. During the panel, all speakers acknowledged the impossibility to warranty anonymised data when processing thousands of facts, shedding light on the need for specific measures for the protection of health data. Future work in this area is neede.  

See the full Exploring the value of health data RAND study here.

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