Sharing of data from human research is possible. Everyone can play a role in promoting and supporting sharing of this data.
There are various ways research administrators can support sharing of data:
- Encourage data sharing by ensuring that ethics forms include relevant questions.
- Encourage an institutional approach to data management planning by creating or supporting data management planning policies.
- Support institutional data archives to develop policies for managing sensitive data.
Human Research Ethics Committees
The ANDS Guide on Data sharing considerations for Human Research Ethics Committees is a practical approach to how HRECs can support the safe sharing of sensitive data through:
- encouraging safe data sharing.
- requesting that data management plans be attached to ethics applications.
- providing advice to researchers about designing their research so the data can later be shared.
- adding a question to your ethics application form: "Is there any reason NOT to share the data from this project?”
- adding suggested wording to your Institution’s participant information sheets and consent forms that ask for permission from participants to share data.
- ensuring that researchers intending to re-use data adhere to the original ethics approval conditions for which consent from the original participants was obtained.
- establishing a framework for considering applications that wish to use new forms of data (e.g. social media feeds, government information, data derived from tracking systems). The OECD provides guidance in their report: Research Ethics and new Forms of Data for Social and Economic research.
The ANDS Guide to Publishing and sharing sensitive data offers practical advice to researchers on how to:
- plan to share data when you design your project
- seek approval from your human research ethics committee to share your data
- obtain informed consent from participants to share their data
- de-identify the data and/or restrict access to it (conditional access).
Understanding Patient Data, a UK based initiative, has evidence based guidance on wording to use with patients when seeking consent to share patient data.
Hear it from the experts
- Is it ethical NOT to share? Data publication meets research ethics in 50 seconds (YouTube, 50 sec) Professor Michael Martin, Chair of the ANU Human Research Ethics Committee
- A risky business…or is it? The benefits of publishing sensitive data in a snapshot (YouTube, 1 min) Professor Michael Martin, Chair of the ANU Human Research Ethics Committee, discusses de-identified data, research beneficence and risk
- Professor Michael Martin (ANU) provides practical advice about sharing human data as part of ethical research practice (YouTube, 40 min) and Baden Appleyard, a barrister, offers insight into legal requirements.
- Clinical data disclosure in 90 seconds (YouTube, 90 sec) with Iain Hrynasckiewicz, Head of Data and HSS Publishing, Open Research Nature Publishing Group and Palgrave Macmillan