This document discusses challenges and options for sharing qualitative research data while protecting confidentiality. It outlines strategies such as obtaining informed consent across the data lifecycle, anonymizing data through techniques like replacing identifying information, and regulating access to sensitive data. The document provides examples of consent forms that address data sharing and archiving. It also describes the UK Data Service's repository ReShare, which allows researchers to deposit and publish metadata about their data collections while applying access controls or embargoes as needed.

1. Making Qualitative Data Open
Libby Bishop
UK Data Service
University of Essex
RECODE – Open Access to Research Data
University of Sheffield
14-15 May 2015

2. …how do we design systems that make
use of our data collectively to benefit
society as a whole, while at the same time
protecting people individually?…This is
it: this is the fundamental issue of the
information age.”
Bruce Schneier 2015 Data and Goliath

3. Qualitative data challenges
• Strong relationships of trust, commitments to confidentiality
• Participant identity difficult to conceal
• Audio and visual data
• Research locations potentially identifiable
• Difficult to anonymise data without reducing research value
• Research may investigate illegal activities
• But potential benefits of data sharing make it imperative to
face these challenges

4. Options for sharing confidential data
• Obtain informed consent, also for data sharing and
preservation / curation
• Protect identities e.g. anonymisation, not collecting personal
data
• Regulate access where needed (all or part of data) e.g. by
group, use, time period
• Securely store personal or sensitive data (separately)

5. Consent needed across the data life cycle
• Engagement in the research process
• decide who approves final versions of transcripts
• Dissemination in presentations, publications, the web
• decide who approves research outputs
• Data sharing and archiving – broad consent
• consider future uses of data
Always dependent on the research context – special cases
for covert research, verbal consent, etc.

6. In practice: consent form / information sheet
We expect to use your contributed information in various outputs,
including a report and content for a website. Extracts of interviews
and some photographs may both be used. We will get your
permission before using a quote from you or a photograph of you.
After the project has ended, we intend to archive the interviews at
…. Then the interview data can be disseminated for reuse by other
researchers, for research and learning purposes.
The interviews will be archived at ……. and disseminated so
other researchers can reuse this information for research and
learning purposes:
 I agree for the audio recording of my interview to be
archived and disseminated for reuse
 I agree for the transcript of my interview to be archived and
disseminated for reuse
 I agree for any photographs of me taken during interview to
be archived and disseminated for reuse
http://ukdataservice.ac.uk/manage-data/legal-ethical/consent-data-sharing/consent-
forms.aspx

7. Anonymising (qualitative) data
• plan or apply editing at time of transcription
except: longitudinal studies - anonymise when data
collection complete (linkages)
• avoid blanking out; use pseudonyms or replacements
• avoid over-anonymising - removing/aggregating information in
text can distort data, make them unusable, unreliable or
misleading
• consistency within research team and throughout project
• identify replacements, e.g. with [brackets]
• keep anonymisation log of all replacements, aggregations or
removals made – keep separate from anonymised data files

8. In practice: example anonymisation

9. Managing access to data
• Preferred option when anonymisation is ineffective or damaging
• Visual or audio data or disclosive microdata
• UK Data Service Access Policy has three tiers:
• Open data - no registration, but may be licenced, e.g. CC
• Safeguarded data – not personal, but disclosure risk if linked
• Registration required, agree End User Licence
(e.g. not identify any potentially identifiable individuals)
• Special agreements (depositor permission; approved
researcher)
• Embargo for fixed time period
• Controlled data - may be identifiable
• Only available to accredited users
• Accessed via onsite or virtual secure environment
(secure lab)

10. In practice: data with access conditions
Health and Social Consequences of the Foot and Mouth Disease
Epidemic in North Cumbria, 2001-2003 (study 5407 in UK Data Archive
collection) by M. Mort, Lancaster University, Institute for Health
Research.
• Interviews (audio + transcript) and written diaries with 54 people
• 40 interview and diary transcripts are archived and available for re-
use by registered users
• 3 interviews and 5 diaries are embargoed until 2015
• audio files archived and only available by permission from
researchers
discover.ukdataservice.ac.uk/catalogue/?sn=5407
doc.ukdataservice.ac.uk/doc/5407/mrdoc/pdf/q5407userguide.pdf

11. How “open”?
• Not all data can be made open, if we mean open = public
• Publish/advertise:
• Which data exist
• Where data are kept, e.g. which repository
• Who can access them
• For what purposes
• Under which conditions

12. ReShare (UK Data Service)
• self-deposit data repository for research data
• remit: “data resources of value to research and
teaching communities across and beyond the
social science discipline” (Collections
Development Policy)
• ESRC award holders: contractual requirement to
archive and share their research data
• reshare.ukdataservice.ac.uk

13. ReShare features
• UK Federation Access authentication of data depositors and
users
• Pull related project information from RCUK Gateway to
Research
• Publish metadata records to UK Data Service Discover
portal
• DOI minted
• UKDS staff review data collections before publishing
• Access options for individual files or zip bundles:
• open access – CC licence
• safeguarded access - UK Data Service End User licence
• permission access
• embargo (up to 12 months)

17. Our data management guidance
• Online best practice guidance: ukdataservice.ac.uk/manage-data.aspx
• Managing and Sharing Research Data – a Guide to Good Practice:
(Sage Publications Ltd)
• Helpdesk for queries: ukdataservice.ac.uk/help/get-in-touch.aspx
• Training: www.data-archive.ac.uk/create-manage/advice-training/events

18. Questions
Libby Bishop
ebishop@essex.ac.uk