Presentation given at Li Ka ShIng Library on 30 September 2015</p

OLESEN, Sarah

Institutional Knowledge at Singapore Management University

Singapore Management UniversityInstitutional Knowledge at Singapore Management UniversityLibrary Events SMU Libraries9-2015Health-y Sharing of Human DataSarah OLESENAustralian National Data ServiceFollow this and additional works at: https://ink.library.smu.edu.sg/lib_eventsPart of the Library and Information Science CommonsThis Invited Academic Talk/Lecture is brought to you for free and open access by the SMU Libraries at Institutional Knowledge at SingaporeManagement University. It has been accepted for inclusion in Library Events by an authorized administrator of Institutional Knowledge at SingaporeManagement University. For more information, please email libIR@smu.edu.sg.CitationOLESEN, Sarah. Health-y Sharing of Human Data. (2015). Library Events.Available at: https://ink.library.smu.edu.sg/lib_events/7Health-y sharing of human dataDr. Sarah Olesen30 SEPTEMBER 2015, SMU LibraryAustralian National Data Service1Manage dataConnect dataFind dataReuse data• Each is a necessary condition for subsequence activity• Research data is an institutional and national assetIncreasing value of datahttp://www.ands.org.au/• Data publication and sharing• Sensitive data• Why?23Plan aheadShare responsibly& you can& reap the rewards!Lets talk about research data5Key questions about publishing and sharing human dataWhat are sensitive data?How do my guidelines support/conflict with sharing health data?Where does health data sit within open access agenda?What if the data come from multiple (health) sources?What are my obligations to participants?Will the Institutional Review Board approve?Where does Privacy laws come in?How do I licence sensitive health data?How/do these data have to be modified before they can be shared?What makes data sensitive?7Personal information + potential for harm or discriminationWhy are sensitive data often trickier to publish and share?8Australia’s National Health & Medical Research Council: Statement on Data SharingImage from: https://www.nhmrc.gov.au/grants-funding/policy/nhmrc-statement-data-sharing- Legal obligations - Negotiate data ownershipApply a licence10Personal Data Protection Act 2012 Personal data refers to data, whether true or not, about an individual who can be identified from that data; or from that data and other information to which the organisation has or is likely to have access.Definions: LegalCannot be disclosed without consentDefinions: Research ethics11‘any data that contain information that can be used to identify an individual and introduce a risk of discrimination, harm, or unwanted attention.’ ANDS Guide to Publishing and Sharing Sensitive Datahttp://www.ands.org.au/datamanagement/sensitivedata.html12What kinds of data are sensitive?Medical recordsSocial surveysInterview transcriptsGroup membershipFinancial detailsCultural practices???What kinds of sensitive data do you deal with?13Ethically141. Informed consent before sharing2. Avoid harm by removing minimising sensitivity• Modify data to protect privacy *if possible*• Confidentialising data • Conditions around access to data3. Institutional approval (SMU Institutional Review Board)Confidentialised data‘removing or altering data so that people or the subjects of the data cannot be identified’ANDS Guide to Publishing and Sharing Sensitive Datahttp://www.ands.org.au/datamanagement/sensitivedata.html15• What to do when you already have data• Questions to ask before you publish/share• Example 1: interviews• Example 2: Judy Ford17Sticky carrots18• Funding bodies, e.g. NIH, NHMRC• Publishers, e.g. PLOS, BMJ• Local & institutional policiesExamples: https://grants.nih.gov/grants/sharing.htmhttps://www.nhmrc.gov.au/grants-funding/policy/nhmrc-statement-data-sharinghttp://journals.plos.org/plosone/s/data-availability; ttp://www.bmj.com/content/350/bmj.h2373Carrots for researchers195. Efficiency – time and cost6. Ethics – participant fatigue, getting needed information out there quickly20What this looks like in the real worldFirst, can human data be open access?• Depends on consent, identification, institutional  approval• Often ‘conditional’/’mediated’/’restricted’/’shared’ access in data repositories or between peers21‘Open / Shared / Closed: The world of data’CC-BY-SA Open Data Institute link22Storage & repository options2324Screenshot: http://hrsonline.isr.umich.edu/index.php?p=datahttp://www.alswh.org.au/Yale University Open Data Access (YODA) ProjectScreenshot: https://www.melbourneinstitute.com/hilda/data/Take away25• It can be done!• Plan ahead• Ask about: participant consent? instit approval? modify data first?• Access: Conditional? Open? What restrictions?• Increasing benefits for researchers and institutions

Health-y Sharing of Human Data

https://ink.library.smu.edu.sg/cgi/viewcontent.cgi?article=1006&context=lib_events

Health-y Sharing of Human Data

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Institutional Knowledge at Singapore Management University