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A 21st Century Embarrassment of Riches: The Balance Between Health Data Access, Usage, and Sharing
John H Holmes1, Lina F Soualmia2,3, Brigitte Séroussi3,4
1University of Pennsylvania Perelman School of Medicine, Philadelphia, USA.
Objectives:
To provide an introduction to the 2018 International Medical Informatics Association (IMIA) Yearbook by the editors.
Methods:
This editorial provides an overview and introduction to the 2018 IMIA Yearbook which special topic is: "Between access and privacy: Challenges in sharing health data". The special topic editors and section are discussed, and the new section of the 2018 Yearbook, Cancer Informatics, is introduced. Changes in the Yearbook editorial team are also described.
Results:
With the exponential burgeoning of health-related data, and attendant demands for sharing and using these data, the special topic for 2018 is noteworthy for its timeliness. Data sharing brings responsibility for preservation of data privacy, and for this, patient perspectives are of paramount importance in understanding how patients view their health data and how their privacy should be protected.
Conclusion:
With the increase in availability of health-related data from many different sources and contexts, there is an urgent need for informaticians to become aware of their role in maintaining the balance between data sharing and privacy.
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