Access modes, sensitive data, registered access, controlled access

Status

Ready for review

FAIR elements

Accessibility

There are no prerequisites defined for this lesson plan.

After completing this lesson plan, the participants are capable of:

Become familiar with data sharing principles (also: understand what Accessible means in FAIR principles)

Able to define what is e.g. a controlled access, registered access, etc

Understand basics of how licensing and archival works in a context of controlled/registered access

Know about various (FAIR) data sharing services

Understand underlying concepts for sensitive data sharing e.g. anonymisation, pseudonymisation

Learn about various roles relevant to (and involved in) processes for which approvals are required e.g. data controller, data protection officer

Relevant agreements e.g. data access agreement, DPIA

Understand different types of life sciences data in terms of accessibility levels

Topic, definition and scope

Difference between sensitive and personal data
Federated data access (local sources)
Relevant legislations, policies, and recommendations

FAIR element(s)

A - Accessible: working with the community of researchers who have sensitive data and wish to know how to enable FAIR for data that needs to have controlled access.

Summary of Tasks / Actions

Use case: https://doi.org/10.25504/FAIRsharing.dab53d https://fairsharing.org/4203 or any of the other data dashboards with FAIRsharing, which deals with sensitive data.
FAIRsharing’s educational factsheet on databases
Exercise:Define types of access modes (tip: use examples from own research field)
Exercise: Reviewing case study (FAIRness of it) and how it can be improved
Exercise: Prepare (contribute with) a use case from your institution - collect via GitHub?

Materials / Equipment

Reading material?
- Registered access: authorizing data access https://www.nature.com/articles/s41431-018-0219-y

References

…cooperate with data protection officer (EE)
…

Take home tasks/preparation

Understanding what principles to consider in a context of sharing sensitive data
…

Allyson Lister

Branka Franicevic

Nazeefa Fatima

The terms4FAIRskills project has created a formalised terminology that describes the competencies, skills and knowledge associated with making and keeping data FAIR.

Data steward data librarian data manager principal investigator researcher	wants competency in	information security understand information security challenges understanding fair and open research challenges in your organization authorisation management
Online documentation	confers competency about	information security understand information security challenges understanding fair and open research challenges in your organization authorisation management
Online documentation	confers knowledge about	access
Online documentation	supports implementation of	accessibility of digital assets