Managing sensitive data in your repository
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This document discusses managing sensitive data in repositories. It notes that repositories can support fully open, mediated access, or closed/private data, and most contain a combination of open and mediated access data. Sensitive health data can be managed in repositories by de-identifying data where possible, restricting access otherwise, and ensuring proper licensing, metadata, and identifiers are included to aid discovery and reuse while maintaining privacy. The biggest challenge is having longitudinal individual data needed for research while maintaining privacy through de-identification, as some data may need to be omitted from datasets as a result.
Managing sensitive data in your repository
- 1. Managing sensitive data in your repository Natasha Simons Sharing Health-y and Sensitive Data: Challenges and Solutions Workshop Perth 3 September 2015
- 2. What is a data repository? 1 A research data repository is a managed environment capable of storing and sharing (largely) digital data. The data repository supports the process of curating, preserving, and sharing research data.
- 3. What kinds of data repositories are there? 2
- 4. Are repositories for open data only? 3 Yes and no….because it depends on the purpose/scope Repositories can support data that is: 1. Open access only 2. Mediated access only 3. Closed/private only Most data repositories are a combination of 1 & 2
- 5. Are there health data repositories? 4 Yes, many! http://www.nlm.nih.gov/NIHbmic/nih_data_sharing_repositories.html
- 6. What’s the point of data repositories? 5 Data repositories assist researchers and the research community to: 1. Support data sharing, data discovery & reuse, data preservation 2. Comply with publisher requirements 3. Comply with funder requirements 4. Comply with institutional or govt policy requirements 5. Support institutional goals Illustration credit: Ainsley Seago. doi:10.1371/journal.pbio.1001779.g001
- 7. Can sensitive data be managed in a repository? 6 Yes! Ask: • Can the raw data be (de-identified and) made completely open? Or will access be restricted? Mediated? • What licence should be applied to enable data reuse? • What metadata elements, links (e.g. to publications) and identifiers (e.g. DOIs, ORCIDs) will aid discovery and reuse of the data? Source: http://www.slideshare.net/WLSA_ORG/wh2014-workshop-health-data-consortium
- 8. Can sensitive data be managed in a repository? 7 Also ask: • Can a citation element be added to support attribution and reuse tracking? • Who/what will be the method of contact for the data? • Are there other conditions that the data is subject to e.g. release subject to an embargo period?
- 9. Examples of sensitive data in repositories? 8
- 10. Examples of sensitive data in repositories? 9
- 11. Examples of sensitive data in repositories? 10
- 12. Examples of sensitive data in repositories? 11
- 13. Examples of sensitive data in repositories? 12
- 14. Examples of sensitive data in repositories?
- 15. What’s really challenging? 14 “Having longitudinal data on individuals is a part of many observational designs, and is needed for research into outcomes, efficacy and many mechanistic studies. Most repositories thus have longitudinal observations. To build such a database you need some way to link observations on the same identified person. Therefore most repositories contain personally identified data, but, because of privacy concerns, they often release only de- identified data. Difficulties in the de-identification process can cause some data to be omitted in a dataset. A lack of direct identifiers in a data collection or federation could prevent linking of data for some patients. From: Wade, T. Traits and Types of Health Data Repositories. Health Information Science and Systems 2014, 2:4 doi:10.1186/2047-2501-2-4 http://www.hissjournal.com/content/2/1/4
- 16. Small group exercise 15 Discovering sensitive health data in repositories Small group exercise
- 17. Acknowledgement Australian National Data Service is funded by the Commonwealth under the NCRIS Program 31 August, 2015 16