Personal Data Resources

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

Standards

UK NHS Information Governance Toolkit (IGT): https://www.igt.hscic.gov.uk/

Australian Guidelines for the Disclosure of Secondary Use Health Information for Statistical Reporting, Research and Analysis 2015: http://www.aihw.gov.au/WorkArea/DownloadAsset.aspx?id=60129553404

American Guidance for methods for de-identification of protected health information in Accordance with the Health Insurance Portability and Accountability Act (HIPAA) Privacy Rule: http://www.hhs.gov/hipaa/for-professionals/privacy/special-topics/de-identification/index.html

Best practice

UKDA, the 5 Safes: https://researchdata.jiscinvolve.org/wp/2015/04/23/uk-data-service-guest-post-providing-access-to-sensitive-data-using-the-5-safes/

UKDA definitions: http://www.data-archive.ac.uk/create-manage/consent-ethics
UKDA list of resources: http://www.data-archive.ac.uk/create-manage/consent-ethics/resources

Jisc guide on archiving personal data: https://www.jisc.ac.uk/guides/data-protection-and-research-data/archiving-data

The Australian National Data Service's Guide to publishing and sharing sensitive data: http://www.ands.org.au/__data/assets/pdf_file/0010/489187/Sensitive-Data-Guide-2016.pdf

Preparing raw clinical data for publication: guidance for journal editors, authors, and peer reviewers: http://www.bmj.com/content/340/bmj.c181

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: http://www.carltonconnect.com.au/read-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: https://www.maynoothuniversity.ie/iqda/data-resources/resources-researchers

Institutional policies & resources:

University of Edinburgh: http://www.ed.ac.uk/humanities-soc-sci/information-for-staff/information-security-and-governance/what-information-do-i-have-to-protect/best-practice-of-personal-data-management

UCL, Personal and sensitive research data & the law: https://blogs.ucl.ac.uk/rdm/2016/01/personal-and-sensitive-research-data-the-law/

LSE: http://www.lse.ac.uk/library/usingTheLibrary/academicSupport/RDM/doing/anonymisation.aspx

University of Bristol policies and guidance (including a video and online training course): https://data.bris.ac.uk/sensitive-research-data/

Anonymising

Jisc guide: https://www.jisc.ac.uk/guides/data-protection-and-research-data/anonymous-data

ESRC: http://eprints.ncrm.ac.uk/480/1/0706_anonymising_research_data.pdf

med.data.edu.au guidance on anonymisation: http://med.data.edu.au/anonymisation/

The Irish Qualitative Data Archive : https://www.maynoothuniversity.ie/iqda/data-resources/resources-researchers

US National Institute of Standards and Technology report on de-identification 2015 http://nvlpubs.nist.gov/nistpubs/ir/2015/NIST.IR.8053.pdf

Case studies

UKDA Biobank case study on page 30 of 40: http://www.data-archive.ac.uk/media/2894/managingsharing.pdf

Trainings

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Projects and services

Safe Share (Jisc): Addressing the need for UK researchers to use and share sensitive data safely and securely - https://www.jisc.ac.uk/rd/projects/safe-share

DataSHIELD (University of Bristol): developing open source software to facilitate secure data analysis in the biomedical sciences - http://www.datashield.ac.uk/