DATUM for Health – Healthy research needs healthy data

I’ve collected my data, so what do I do with it now?

Research data management

Session 3Problems and practical strategies and

solutions

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Overview

What issues confront the researcher in managing research data?

Strategies & tactics for dealing with these problems

Confidentiality and data sharing Data storage and security File structures, file names and metadata Round up; What next?

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Learning outcomes

By the end of this session you should have: an awareness of research data management

problems knowledge of practical solutions to research data

management problems the ability to develop a research data

management strategy for the rest of your PhD the ability to manage data in a future career

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Reasons to manage research data

Why is research data management important?

Prof Charlotte Clarke, Associate Dean for Research, School of Health, Community & Education Studies

Prof Julie McLeod, School of Computing, Engineering

& Information Sciences

1. a requirement 2. to work effectively &

efficiently 3. to protect it4. for use and/or re-use5. to share it6. for preservation7. because it is good

research practice

Data management is essential to excellence in

research

Apart from the benefits for research, good data management is vital for

many reasons: accountability, security, appropriate data-sharing, re-use protocols and preservation

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What problems do you have managing your research data?

In your PhD1. what conflicting

considerations have you had in managing your data?

2. what resource issues have you had in managing your data?

3. what other problems have you had in managing your data?

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Conflicting data management considerations

Data confidentiality

And

Data sharing

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Data ownership and consent

Participant consent forms data use – consent should be gained for all potential

uses ownership copyright

JISC copyright guidance www.jisc.ac.uk/news/stories/2011/04/IPRmodule.aspx

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Confidentiality and data sharing

Anonymisation Barnardisation

www.computescotland.com/scottish-leukemia-request-sets-freedom-of-information-against-data-protection-1031.php

Freedom of Information Act www.ico.gov.uk/

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Problem Triggers

Personal dataData Protection Act, 1998 Information Commissioner’s Office

www.ico.gov.uk/

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Data Protection Act – managing personal data

1. Obtained and processed fairly and lawfully2. Obtained and processed only for specified lawful purposes3. Adequate, relevant and not excessive4. Accurate and, where necessary, up to date5. Kept no longer than necessary. 6. Processed in accordance with the rights of the data subjects7. Kept securely and safely. 8. Only transferred outside EEA with specific protectionsJISC, Data Protection Code of Practice

www.jisc.ac.uk/publications/generalpublications/2001/pub_dpacop_0101.aspx

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Data Protection Act - sensitive personal data

a) physical or mental health b) sexual life c) racial or ethnic origind) political opinions or religious or philosophical

beliefs e) trade union membershipf) the commission/alleged commission of any

offence

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Problem triggers

Ethical considerations New research requirements Commercial sensitivities Public reaction to the

research Right to withdraw from the

researchKnow your sector

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Some health related guidance Occupational Health Solutions

www.occupationalhealth.co.uk/subscribers/medical_records_and_confidentiality.htm

GMC, Confidentiality www.gmc-uk.org/guidance/ethical_guidance/confidentiality.asp

The Nursing and Midwifery Council Code of Professional Conduct http://www.nmc-uk.org/Nurses-and-midwives/Advice-by-topic/A/Advice/Confidentiality/

A Code of Ethics for Social Work (2002) http://bjsw.oxfordjournals.org/content/32/2/239.abstract

The Caldicott Guardian Manual (2010) www.dh.gov.uk/en/Managingyourorganisation/Informationpolicy/Patientconfidentialityandcaldicottguardians/DH_4100563

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Anonymisation exercise

Anonymising qualitative data exercise Foot and Mouth Disease example from the UKDA

collection

DATUM for Health – Healthy research needs healthy data

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Data security and storage

What security measures should I take with the personal data I hold?

ICO tips www.ico.gov.uk/for_organisations/data_protection/security_measures.aspx

www.unc.edu/courses/2010spring/law/357c/001/cloudcomputing/security-policy.html

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Data security and storage

Home

Office

Field

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Data security and storage

Virtual Spaces

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Collecting data

Consider device and software

Audio recorder Digital camera Laptop, iPad, iPhone etc Email Web 2.0/Open Source

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Storing data within the universityUniversity system (protect your passwords) - U drive advised for personal information and Shared

drives for collaborative work Microsoft Office suite NVivo Via Citrix:

Endnote Mind Genius SPSS

Data collection Audio recorders Laptop Email Web 2.0 applications

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Home access

Desk Top Anywhere Audio recorders Lap tops Email Web 2.0/Open Source Drop Box

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Northumbria University guidance

Research ethics and governance handbook www.northumbria.ac.uk/static/5007/respdf/ethics_handbook_2.pdf

Data storage and protection policy - draft www.northumbria.ac.uk/static/5007/respdf/data-

prot_secure_storage.pdf HCES research guidance

www.northumbria.ac.uk/sd/academic/sches/research/861565/

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Sending emails

E-mail is similar to a postcard. E-mail is *not* secure—nor is it private. Encryption is the only way to help in

preventing others from reading your e-mail.

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Physical security

Manage access to all confidential data Lock away all confidential documents and

storage devices including laptops Shred confidential documents Destroy USB sticks etc

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Organise your documents and files

Organize your data! Develop file plans Develop naming conventions Think about access, search and reference over

time Be consistent across software systems and

devices

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Folders and documents

Make separate folders and copy documents for NVIVO or other analysis activities which will alter the document

Make sure paper and electronic records can be mapped

Make sure raw and anonymised data can be mapped

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File names Keep file names short but meaningful Avoid special characters, e.g. /\:[] Underscore spaces _ or %20 may replace it Reverse dates so they sort usefully

YYYYMMDD e.g. 20111805 Ensure document version control e.g. V01, V02, for drafts V0.1, V0.2

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File names A file name can be an audit trail File name e.g. IP02R0120110205.doc File name components I P02 R01 20110205

I = interview (type of data) P[n] = participant ID - participant 02 R[n] = researcher ID – researcher 01 Date of interview in form YYYYMMDD – 20110205

Compare with the file name interview02.doc

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Resources

NCDCR, Best practices for file-naming www.records.ncdcr.gov/erecords/filenaming_20080508_final.pdf

BSI (2005) BSI 8723:2 Structured vocabularies for information retrieval. Guide. BSI.

Jisc, Choosing a file name www.jiscdigitalmedia.ac.uk/crossmedia/advice/choosing-a-file-name

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Resources

University of Edinburgh Records Management Section, Standard Naming Conventions For Electronic Records: The Rules, www.recordsmanagement.ed.ac.uk/InfoStaff/RMstaff/RMprojects/PP/FileNameRules/Rules.htm

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Metadata

“Data about data”www.ed.ac.uk/schools-departments/information-services/services/research-support/data-library/research-data-mgmt/data-mgmt/data-

documentation

Use customisation options e.g. Microsoft document properties and document templates

Create your own document templates Utilise tools to add metadata

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File management exercise

Look at a social work research scenario context

1. List the research data and documentation that would be created

2. Develop a list of file names3. Structure the file names into a fileplan

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Roundup / What next?

Round up Directed learning tasks – your RDM moving

forward Reflect on your strategies and procedures

e.g. anonymisation, files names, fileplan, data security

Embed RDM into your PhD work e.g. portfolio, training plan, supervisory sessions

DATUM for Health – Healthy research needs healthy data

Project funded by JISCCopyright holder: Northumbria University, School of Computing, Engineering & Information Sciences, 2011Northumbria University Materials made freely available under a Creative Commons Attribution-NonCommercial-ShareAlike 2.0 UK: England & Wales license

DATUM for Healthwww.northumbria.ac.uk/datum