Sarah Olesen, ANDS Sept 17, 2015

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Health-y sharing of human data

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Plan aheadShare responsibly(& you can)

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Lets talk about data

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•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 –individual-level health data (i.e., not aggregated)

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Key questions about publishing and sharing health data

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What do we want to know about health and sensitive data?

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What makes health data sensitive?

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Personal (identifiable) information+ potential for harm or discrimination

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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

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‘any data that contain information that can be used to identify an individual and introduce a risk of discrimination, harm, or unwanted attention.’

Ethically

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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!

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• 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.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.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):

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‘government data will be open by default’

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‘…the findings of research funded with public funding should be made available to the wider community…’

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• Your institutional policies

• National Statement on Ethical Conduct in Human Research

Future use – 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!)

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Sharing and re-using human data is ethical?

??

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•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/datamanagement/sensitivedata.html

If you can’t share the data itself, publish metadata so its discoverable

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•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?

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What does this look like in the real world?

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Screenshot: http://hrsonline.isr.umich.edu/index.php?p=datahttp://www.alswh.org.au/

Yale University Open Data Access (YODA) Project

Screenshot: https://www.melbourneinstitute.com/hilda/data/

Take away

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• 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?