Pseudonymisation as a Service Robert Navarro Copyright © 2011 Sapior Ltd

Sapior Vision Enabling the Ethical Sharing of Data Ethical Data Sharing Trust Management Researchers Preventative medicine Pharmaceuticals Insurers Health Entrepreneurs Data Guardians Data Consumers Sapior believes privacy and utility are not antithetical. There is always a solution as long as you use the least amount of identifiable data, for the least time, visible to the smallest number of vetted people for each separate need/topic/application. Ethical sharing is sharing that patients/subjects are happy with – not least required by law. Sapior wrote the privacy section of BT’s winning Spine/SUS bid We provided the de-identification standard for NHS Spine/SUS Copyright © 2011 Sapior Ltd

Enhanced Trusted Third Party No ECC approval needed! On demand, no pooling Easy to upload data cleansing, standardisation, enriching, de-ID done on-site Pseudo and linking done in eTTP Separate collection per application No data visible to eTTP  Ethics approval easy ECC reviewed Copyright © 2011 Sapior Ltd

Features and Benefits No breach risk in “pipeline” Easier/faster Ethics/IG approval Use eTTP on demand No/low cost when not collecting/linking Separate collection for overlapping projects Informed consent possible Easy uploading of data No need to pool data across projects No eTTP pooling of data No growing breach risk in eTTP Highest grade pseudo No technical worries over security Copyright © 2011 Sapior Ltd

Standards that would be helpful… Metadata to describe data for upload (including null/missing values) Common means for extracting CSV data from local systems To register for a trial: Copyright © 2011 Sapior Ltd