Training for de-identifying human subjects data for sharing: a viable library service

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David S. Fearon

JHU Data Management Services

Jennifer Darragh

Sheridan Library GIS & Data Services Johns Hopkins University

IASSIST ‘15 June 5, 2015

Training for de-identifying human

subjects data for sharing:

a viable library service

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Collaborating on a training and

service area

Data Management Planning & consulting

Archiving and Sharing Research Data

Data Management Training Workshops

GIS AND DATA SERVICES

GIS training & software Statistics software support Subscription data services Data discovery

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JHU Data Management Services

Data Management Training Topics

Preparing Data Management Plans Data Management Best Practices

Sharing Data in

Spreadsheets

Preparing Data

for Archiving

Removing Human Subject Identifiers

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• Our most popular training topic

• An underserved topic in JHU’s research support • Offered a new support service area

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data management during the project

acquire data dissemination archiving preservation Idea / proposal Data re-use / discovery Preparing Data for Sharing & Archiving Data Management Planning

“Concierge” service for the

JHU Research Data Life Cycle

Manage Data in JHU Data Archive

IRB(s) Data/GIS Librarians Subject Librarians Research Admin Central IT IT within Schools Biostats Center Data manager group

HPCs Tech Transfer Research Conduct General Counsel Archives Institutional Repository

Institutes with focus on security, clinical data, etc. Institutional

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Contexts for developing data de-Identification training

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data management during the project

acquire data dissemination archiving preservation Idea / proposal Data re-use / discovery

Contexts for developing data de-Identification training

Sharing and archiving human subjects data: a role for Research Data Services

IRB: plans for protecting subjects and data acquisition

Storage/backup Access/security Data Organization Researcher must mitigate disclosure risk during research

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Johns Hopkins Data Archive

Protecting identifiers is critical for serving

open access data

Ultimately the researcher's

responsibility, but the Archive can provide guidance

https://archive.data.jhu.edu

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Compliance with US Funder

Open Access Policies

• Broader emphasis on data sharing

• Encourages efforts at removing identifiers for public access

• NIH policy changes have big impact at Johns Hopkins

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Trained by the ICPSR

• 4 day course topics:

• Locating and protecting identifiers in data • Assessing disclosure risk in shared files • Techniques for mitigating disclosure risk

in public-use files

• ICPSR gave permission to adapt training • Filtered material into a 1 hour session • Drew upon additional literature

• Shifting focus from disclosure mitigation by

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Developing the training

• Vetted training material with JHU IRB offices

• Developed a supplementary handout

https://jh.box.com/De-IdentificationTips

Disclaimer: We are providing advice; IRB is the final authority on this subject

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Removing Identifiers from Human Subject Data

Protecting

identifiers in field Locating

identifiers IRB & consent

forms

Removing or masking identifiers

Sharing publicly available datasets

• How to locate & protect personal identifiers

• How to prepare de-identified datasets for sharing

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Audience response to the training

• First session in March 2013

• 12 sessions, ~250 attendees to date • 2 campus venues at JHU

– Social sciences at JHU Arts & Sciences – Health Sciences at Schools of

Medicine, Nursing, Public Health • Reaching graduate students, research

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Requests for department presentations was

incentive for customized content

Radiology - Removing identifiers from

medical images _{Education - FERPA guidelines}

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Expanding disclosure protection support as an area of data services

Interior of George Peabody Library

Contexts:

• Funder Open Access policies for data sharing • University's push for better data management,

compliance and privacy protection

• JHU Data Archive's responsibility to researchers depositing open access data.

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Interior of George Peabody Library • De-identification software tool support

Applications to Assist in De-identifying Human Subjects Research Data

Unstructured Text Data in Digital Images

Tabular or Otherwise Structured Data DICOMCleaner

Freeware? YES

Intended Purpose? Medical Images in DICOM (Digital Imaging and Communications in Medicine) format

Specific Data Input

Format? DICOM format

Skill Needed technically proficient, requires time investment to learn

Latest Date on

Website 2015

Support? No explicit support

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Interior of George Peabody Library • De-identification software tool support

• Consultation service: guidance to researchers

preparing and sharing public access data

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• De-identification software tool support

• Consultation service: guidance to researchers preparing and sharing public access data

• Identifier disclosure

analysis as part of

JHU's archiving service

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Recommendations for adding identifier

disclosure mitigation services

to your research support

Worth considering: expands visibility, relevance, and campus partnerships for research support services

Talk to IRB and compliance offices about gaps in

support, scoped to data services (e.g., data sharing, preservation, security)

Start small with website resources, build materials for training.

If operating a data archive or institutional

repository, (especially self-deposit) be aware of disclosure risk, consider basic content screening.

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Interior of George Peabody Library

Questions?

Dave Fearon: [email protected]

http://dmp.data.jhu.edu/