Just imagine how you’d feel if your private – and sometimes very intimate – details of your health were accidentally released on the Internet and your employer, insurer, neighbor and former partners were able to see the medication you’ve taken for mental health reasons or for sexually transmitted diseases.
One way to reduce this risk is to anonymize electronic health record data. A free review in Genome Medicine by Khaled El Emam from the University of Ottawa, Ontario looks at current de-identification methods and suggests best practices.
This is a timely issue because electronic health records are being used more and more in clinically important research and they are likely to be key for some major breakthroughs in the diagnosis and treatment of disease. Universities and research centers have strict ethical rules relating to the use of this data and almost always insist on participants giving their consent. But obtaining consent can reduce participation rates and bias these data. Anonymization appears to be the most practical way forward.
El Emam uses the de-identification practices for two genomic research projects: i2b2 (Informatics for integration of biology and the bedside) and eMerge (Electronic Medical Records and Genomics (eMERGE) Network to highlight current methods. The findings are
likely to be of great interest for researchers embarking on similar studies in