1.
Overcoming obstacles to sharing
data about human subjects
Force11 conference
Portland, Oregon
18 April, 2016
Robin Rice
EDINA and Data Library
University of Edinburgh, UK

2.
The elephant
in the room
(David Blackwell on Flickr)

3.
The status quo
 Most data underlying published research, even publicly funded research, are
not shared. How can research claims be verified?
 Common barriers are well-known, confidentiality concerns are high
 Qualitative research data and small-scale surveys are not commonly re-used
 Tendency is to err on side of caution, given legal & ethical responsibilities
 As open science agenda pushes disciplines toward reproducibility, there is a
danger of human subject-oriented research falling behind

4.
Redressing
the imbalance
Caution vs open data sharing
(Seesaw by harmishhk on Flickr)

5.
What a researcher can do to be able to share
 Plan for sharing (via a data management plan)
 Don’t collect personal information that is not needed
 Principle of informed consent: get consent to share data
 Document all data processing (inside & outside analysis package)
 Attribute, anonymise, or aggregate individual’s data

6.
Anonymise it!
(by Greendoula on Flickr)

7.
How to create an anonymised, open dataset
Numeric data, eg. surveys Qualitative data, eg. interviews
Remove names and identifiers Share the edited transcript, not video or audio
unless consented
Renumber and resort case ids Agree a pseudonym with each subject
Group numbers into categories - banding Remind subject not to disclose personal or sensitive
information, eg. about family members
Top and bottom code numbers (age, salaries) Replace proper nouns in text (names, placenames
etc.) using square brackets, don’t blank out
Use standard codes (eg. SOC, SIC) and geographic
boundaries at appropriate levels; not fine-grained
Avoid over-anonymising or data will lose value
Check for low cell counts in cross-tabs Keep a log of all replacements, generalisations or
removals made; store separately from anonymised
data

8.
Restrict access,
if necessary
(James Emery on Flickr)

9.
When open data access is not plausible
 When potential for harm to research subjects is too great
 Information that can be used to discriminate requires extra protection
 When required by the data producer, funder, health authority, etc.
 Sometimes precautions are required even for anonymised data
 When anonymization is either not feasible or would destroy value of
dataset
 Population too small to be anonymous, e.g. those with genetic condition

10.
Lock it up to
keep safe
(Eric Parker on Flickr)

11.
Take proportionate precautions;
ease route to access
 Make documentation and/or code about dataset openly available
 Use a template for a data access application & data use agreement
 Make arrangements for unbiased review of applications for access
 Transfer data safely; use secure channels, encryption
 Consider options for remote access in favour of on-site only access

12.
The dangers of
data linkage

13.
Data linkage
 Probabilistic or ‘fuzzy’ matching is one method used to identify
individuals by combining information from different datasets
 This can be done for legitimate research purposes, such as matching
cases in different government (administrative) datasets
 Informed consent is normally impossible for this technique; the data
were collected for a different purpose than the current research
proposal

14.
Information
governance
to the rescue
(Ryan Stevens on Flickr)

15.
Information governance
 Requires a bigger infrastructure than one researcher can create
 Has been developed to meet ethical standards where informed
consent is not possible and research is in the public interest
 Allowed by current European Data Directive and new regulation forthcoming
 Makes use of the ‘five safes’
 safe data, safe researcher, safe project, safe settings, safe outputs

16.
Check out our free educational resources -
(R.Rice@ed.ac.uk)
Research Data Management Training
MANTRA
http://datalib.edina.ac.uk
Research Data Management & Sharing
MOOC
www.coursera.org/learn/data-
management