1. 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 3 Problems and practical strategies and solutions

2. DATUM for Health – Healthy research needs healthy data 1 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?

3. DATUM for Health – Healthy research needs healthy data 2 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

4. DATUM for Health – Healthy research needs healthy data 3 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 it 4. for use and/or re-use 5. to share it 6. for preservation 7. 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

5. DATUM for Health – Healthy research needs healthy data 4 What problems do you have managing your research data?  In your PhD 1. 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?

6. DATUM for Health – Healthy research needs healthy data 5 Conflicting data management considerations Data confidentiality And Data sharing

7. DATUM for Health – Healthy research needs healthy data 6 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

8. DATUM for Health – Healthy research needs healthy data 7 Confidentiality and data sharing  Anonymisation  Barnardisation www.computescotland.com/scot tish-leukemia-request-sets- freedom-of-information-against- data-protection-1031.php www.computescotland.com/scot tish-leukemia-request-sets- freedom-of-information-against- data-protection-1031.php  Freedom of Information Act www.ico.gov.uk/

9. DATUM for Health – Healthy research needs healthy data 8 Problem Triggers  Personal data  Data Protection Act, 1998  Information Commissioner’s Office www.ico.gov.uk/

10. DATUM for Health – Healthy research needs healthy data 9 Data Protection Act – managing personal data 1. Obtained and processed fairly and lawfully 2. Obtained and processed only for specified lawful purposes 3. Adequate, relevant and not excessive 4. Accurate and, where necessary, up to date 5. Kept no longer than necessary. 6. Processed in accordance with the rights of the data subjects 7. Kept securely and safely. 8. Only transferred outside EEA with specific protections JISC, Data Protection Code of Practice www.jisc.ac.uk/publications/generalpublications/2001/pub_d pacop_0101.aspx

11. DATUM for Health – Healthy research needs healthy data 10 Data Protection Act - sensitive personal data a) physical or mental health b) sexual life c) racial or ethnic origin d) political opinions or religious or philosophical beliefs e) trade union membership f) the commission/alleged commission of any offence

12. DATUM for Health – Healthy research needs healthy data 11 Problem triggers  Ethical considerations  New research requirements  Commercial sensitivities  Public reaction to the research  Right to withdraw from the research  Know your sector

13. DATUM for Health – Healthy research needs healthy data 12 Some health related guidance Occupational Health Solutions www.occupationalhealth.co.uk/subscribers/medical_records_and_confidentiali ty.htm www.occupationalhealth.co.uk/subscribers/medical_records_and_confidentiali ty.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/Patientconfid entialityandcaldicottguardians/DH_4100563

14. DATUM for Health – Healthy research needs healthy data 13 Anonymisation exercise  Anonymising qualitative data exercise  Foot and Mouth Disease example from the UKDA collection

15. DATUM for Health – Healthy research needs healthy data

16. 15 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_measur es.aspx www.unc.edu/courses/2010spring/law/357c/001/cloudcomputing/security-policy.html

17. DATUM for Health – Healthy research needs healthy data 16 Data security and storage Home Office Field

18. DATUM for Health – Healthy research needs healthy data 17 Data security and storage Virtual Spaces

19. DATUM for Health – Healthy research needs healthy data 18 Collecting data  Consider device and software  Audio recorder  Digital camera  Laptop, iPad, iPhone etc  Email  Web 2.0/Open Source

20. DATUM for Health – Healthy research needs healthy data 19 Storing data within the university University 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

21. DATUM for Health – Healthy research needs healthy data 20 Home access  Desk Top Anywhere  Audio recorders  Lap tops  Email  Web 2.0/Open Source  Drop Box

22. DATUM for Health – Healthy research needs healthy data 21 Northumbria University guidance  Research ethics and governance handbook www.northumbria.ac.uk/static/5007/respdf/ethics_handbook_2.pdf 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.pdfwww.northumbria.ac.uk/static/5007/respdf/data- prot_secure_storage.pdf  HCES research guidance www.northumbria.ac.uk/sd/academic/sches/research/861565/

23. DATUM for Health – Healthy research needs healthy data 22 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.

24. DATUM for Health – Healthy research needs healthy data 23 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

25. DATUM for Health – Healthy research needs healthy data 24 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

26. DATUM for Health – Healthy research needs healthy data 25 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

27. DATUM for Health – Healthy research needs healthy data 26 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

28. DATUM for Health – Healthy research needs healthy data 27 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

29. DATUM for Health – Healthy research needs healthy data 28 Resources  NCDCR, Best practices for file-naming www.records.ncdcr.gov/erecords/filenamin g_20080508_final.pdf www.records.ncdcr.gov/erecords/filenamin g_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/adv ice/choosing-a-file-name

30. DATUM for Health – Healthy research needs healthy data 29 Resources  University of Edinburgh Records Management Section, Standard Naming Conventions For Electronic Records: The Rules, www.recordsmanagement.ed.ac.uk/InfoSta ff/RMstaff/RMprojects/PP/FileNameRules/ Rules.htm

31. DATUM for Health – Healthy research needs healthy data 30 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

32. DATUM for Health – Healthy research needs healthy data 31 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 names 3. Structure the file names into a fileplan

33. DATUM for Health – Healthy research needs healthy data 32 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

34. DATUM for Health – Healthy research needs healthy data Project funded by JISC Copyright holder: Northumbria University, School of Computing, Engineering & Information Sciences, 2011 Northumbria University Materials made freely available under a Creative Commons Attribution-NonCommercial-ShareAlike 2.0 UK: England & Wales license DATUM for Health www.northumbria.ac.uk/datum