Personal Data Resources

Below is a curated list of resources for managing personal data and best practice for anonymisation and preservation.


UK NHS Information Governance Toolkit (IGT):

Australian Guidelines for the Disclosure of Secondary Use Health Information for Statistical Reporting, Research and Analysis 2015:

American Guidance for methods for de-identification of protected health information in Accordance with the Health Insurance Portability and Accountability Act (HIPAA) Privacy Rule:

Best practice

UKDA, the 5 Safes:

UKDA definitions:
UKDA list of resources:

Jisc guide on archiving personal data:

The Australian National Data Service's Guide to publishing and sharing sensitive data:

Preparing raw clinical data for publication: guidance for journal editors, authors, and peer reviewers:

Centre for Epidemiology and Biostatistics at the Melbourne School of Population and Global Health's Guidelines for the Ethical Use of Digital Data in Human Research:

The Irish Qualitative Data Archive's best practice guide, an anonymisation guide and a tool which automates some of the process:

Institutional policies & resources:

University of Edinburgh:

UCL, Personal and sensitive research data & the law:


University of Bristol policies and guidance (including a video and online training course):


Jisc guide:

ESRC: guidance on anonymisation:

The Irish Qualitative Data Archive :

US National Institute of Standards and Technology report on de-identification 2015

Case studies

UKDA Biobank case study on page 30 of 40:



Projects and services

Safe Share (Jisc): Addressing the need for UK researchers to use and share sensitive data safely and securely -

DataSHIELD (University of Bristol): developing open source software to facilitate secure data analysis in the biomedical sciences -