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What are health-y data and why are they tricky to publish?

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1) Human health data can be sensitive as it contains personally identifiable information that could harm or discriminate individuals. Sharing such data requires careful planning and consideration of privacy and ethics. 2) Key factors in responsibly sharing health data include obtaining informed consent from participants, removing or modifying data to protect privacy where possible, gaining ethics approval, and only using data for its originally intended purpose without additional consent. 3) Guidelines from funders and publishers encourage sharing data from publicly funded research for the benefit of the wider community, as long as privacy and ethics are upheld. Institutions also have policies regarding retaining and sharing research data.

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Sarah Olesen, ANDS Sept 17, 2015 1 Health-y sharing of human data
2 Plan ahead Share responsibly(& you can)
3 Lets talk about data
4 ?Human data is data collected from or about individuals ?Health data includes information about their health (or others¨) ?Today, we focus on health data that may also be sensitive C individual-level health data (i.e., not aggregated)
5 Key questions about publishing and sharing health data
6 What do we want to know about health and sensitive data?
7
What makes health data sensitive? 8 Personal (identifiable) information + potential for harm or discrimination
9 Privacy Act (1988, s6) Personal information + one or more of: health info, genetic, biometric, political opinion, certain group membership = Sensitive information Legally: Privacy Law What¨s required? Cannot be used beyond original purpose of collection without consent (same for SA Info Priv Principles)
Ethically 10 ｀any data that contain information that can be used to identify an individual and introduce a risk of discrimination, harm, or unwanted attention.¨
Ethically 11 What¨s required? ?Informed consent ?Avoid harm (= remove/minimise sensitivity) \ Where possible, modify data to protect privacy \ i.e. Confidentialising data \ Conditions around access to data ?Ethics Committee approval
Why? Sticky carrots! 12 ? International funders, e.g. National Institutes of Health ? Local funders, e.g. NHMRC and ARC ? Publishers, e.g. PLOS, BMJ https://grants.nih.gov/grants/sharing.htm https://www.nhmrc.gov.au/grants-funding/policy/nhmrc-statement-data-sharing http://journals.plos.org/plosone/s/data\availability; ttp://www.bmj.com/content/350/bmj.h2373 ..encourages data sharing and providing access to data and other research outputs ´ arising from NHMRC supported research NHMRC Statement on Data Sharing (April 2015):
13 ｀government data will be open by default¨
14 ｀´the findings of research funded with public funding should be made available to the wider community´¨
15 ? Your institutional policies ? National Statement on Ethical Conduct in Human Research Future use C s2 ｀Consent to future use of data and tissue in research¨. NHMRC/ARC Australian Code for the Responsible Conduct of Research - s2 guidelines retain data (not destroy!)
16 Sharing and re-using human data is ethical? ??
17link
18 ?Depends on ? Sensitivity (identifiability) ? Participant consent ? Ethics approval How do I share health data?
Putting it all together ANDS Guide to Publishing and Sharing Sensitive Data http://www.ands.org.au/datamanage ment/sensitivedata.html If you can¨t share the data itself, publish metadata so its discoverable
20 ?How ｀open¨ can I be (where/how I publish)? ? Who owns the data? ? Licensing Ownership, and thus data sharing, should be negotiated between all parties involved (as early as possible) How do I share health data?
21 What does this look like in the real world?
22
23 Screenshot: http://hrsonline.isr.umich.edu/index.php?p=data http://www.alswh.org.au/ Yale University Open Data Access (YODA) Project Screenshot: https://www.melbourneinstitute.com/hilda/data/
Take away 24 ? It can be done! ? Be a scout: plan ahead ? Before publishing, ask about: participant consent? ethics approval (from all parties)? modify data first? ? (For later) Conditional access? Or a public and restricted version of data?

More Related Content

What are health-y data and why are they tricky to publish?

  • 1. Sarah Olesen, ANDS Sept 17, 2015 1 Health-y sharing of human data
  • 4. 4 ?Human data is data collected from or about individuals ?Health data includes information about their health (or others¨) ?Today, we focus on health data that may also be sensitive C individual-level health data (i.e., not aggregated)
  • 5. 5 Key questions about publishing and sharing health data
  • 6. 6 What do we want to know about health and sensitive data?
  • 7. 7
  • 8. What makes health data sensitive? 8 Personal (identifiable) information + potential for harm or discrimination
  • 9. 9 Privacy Act (1988, s6) Personal information + one or more of: health info, genetic, biometric, political opinion, certain group membership = Sensitive information Legally: Privacy Law What¨s required? Cannot be used beyond original purpose of collection without consent (same for SA Info Priv Principles)
  • 10. Ethically 10 ｀any data that contain information that can be used to identify an individual and introduce a risk of discrimination, harm, or unwanted attention.¨
  • 11. Ethically 11 What¨s required? ?Informed consent ?Avoid harm (= remove/minimise sensitivity) \ Where possible, modify data to protect privacy \ i.e. Confidentialising data \ Conditions around access to data ?Ethics Committee approval
  • 12. Why? Sticky carrots! 12 ? International funders, e.g. National Institutes of Health ? Local funders, e.g. NHMRC and ARC ? Publishers, e.g. PLOS, BMJ https://grants.nih.gov/grants/sharing.htm https://www.nhmrc.gov.au/grants-funding/policy/nhmrc-statement-data-sharing http://journals.plos.org/plosone/s/data\availability; ttp://www.bmj.com/content/350/bmj.h2373 ..encourages data sharing and providing access to data and other research outputs ´ arising from NHMRC supported research NHMRC Statement on Data Sharing (April 2015):
  • 13. 13 ｀government data will be open by default¨
  • 14. 14 ｀´the findings of research funded with public funding should be made available to the wider community´¨
  • 15. 15 ? Your institutional policies ? National Statement on Ethical Conduct in Human Research Future use C s2 ｀Consent to future use of data and tissue in research¨. NHMRC/ARC Australian Code for the Responsible Conduct of Research - s2 guidelines retain data (not destroy!)
  • 16. 16 Sharing and re-using human data is ethical? ??
  • 18. 18 ?Depends on ? Sensitivity (identifiability) ? Participant consent ? Ethics approval How do I share health data?
  • 19. Putting it all together ANDS Guide to Publishing and Sharing Sensitive Data http://www.ands.org.au/datamanage ment/sensitivedata.html If you can¨t share the data itself, publish metadata so its discoverable
  • 20. 20 ?How ｀open¨ can I be (where/how I publish)? ? Who owns the data? ? Licensing Ownership, and thus data sharing, should be negotiated between all parties involved (as early as possible) How do I share health data?
  • 21. 21 What does this look like in the real world?
  • 22. 22
  • 23. 23 Screenshot: http://hrsonline.isr.umich.edu/index.php?p=data http://www.alswh.org.au/ Yale University Open Data Access (YODA) Project Screenshot: https://www.melbourneinstitute.com/hilda/data/
  • 24. Take away 24 ? It can be done! ? Be a scout: plan ahead ? Before publishing, ask about: participant consent? ethics approval (from all parties)? modify data first? ? (For later) Conditional access? Or a public and restricted version of data?

Editor's Notes

  • #5: ｀records, files or other evidence, irrespective of their content or form (e.g. in print, digital, physical or other forms), that comprise research observations, findings or outcomes, including primary materials and analysed data¨ (Monash University 2010)
  • #7: Image: "Richard Dawson Family Feud 1976" by ABC Television - eBay itemphoto frontphoto back. Licensed under Public Domain via Commons - https://commons.wikimedia.org/wiki/File:Richard_Dawson_Family_Feud_1976.JPG#/media/File:Richard_Dawson_Family_Feud_1976.JPG
  • #14: Screenshot from: http://dpc.sa.gov.au/sites/default/files/pubimages/documents/Signed-Declaration-of-Open-Data.pdf
  • #15: Screenshot from: http://www.sahealth.sa.gov.au/wps/wcm/connect/0fb971004aaf196b9a0dfa7633bbffe0/Directive_Research+Governance+Policy+Directive_Nov2013.pdf?MOD=AJPERES&CACHEID=0fb971004aaf196b9a0dfa7633bbffe0
  • #17: Hang on a minute C its ethical too share data? Hmm, how does this site with issues of privacy and rules that govern research with people? (HREC approval etc. feeds into this) I make this point because it does feel like a conflict C and rightly so C and a question worth spending a minute on
  • #18: This is a clip from Prof. Michael Martin C Chair of two HRECs at the ANU C talking about how sharing is actually consistent with values of human research.
  • #20: So what does this all look like when we string it altogether, and put it into practice?
  • #25: Image from: http://www.arthurweill.fr/Unsplash-results/en/24/COFFEE under CC-0