Patients Know Best Blog

This article was originally published in Genome Medicine on 23rd July 2009: http://genomemedicine.com/content/1/7/73/

Mohammad Al-Ubaydli1 and Rob Navarro2

1UCL Centre for Health Informatics and Multiprofessional Education, Archway Campus, Highgate Hill, London N19 5LW, UK

2Sapior, 16 Byron Avenue, London E18 2HQ, UK

Genome Med 2009, 1:73doi:10.1186/gm73

The electronic version of this article is the complete one and can be found online at: http://genomemedicine.com/content/1/7/73
Published: 22 July 2009

© 2009 BioMed Central Ltd

Abstract

There is value to patients, clinicians and researchers from having a single electronic health record data standard that allows an integrated view, including genotype and phenotype data. However, it is important that this integrated view of the data is not created through a single database because privacy breaches increase with the number of users, and such breaches are more likely with a single data warehouse. Furthermore, a single user interface should be avoided because each end user requires a different user interface. Finally, data sharing must be controlled by the patient, not the other end users of the data. A preferable alternative is a federated architecture, which allows data to be stored in multiple institutions and shared on a need-to-know basis. The data sharing raises questions of ownership and stewardship that require social and political answers, as well as consideration of the clinical and scientific benefits.