ICTR Data Managers Interest Group
October 28, 2014
Best
Practices
Initiative
Kelly Crowley
Best Practices Initiative
• How can we better prepare and protect
ourselves?
• We don’t want a top down approach
• What policies already exist at Hopkins and
other institutions? Examples: Oxford and
DataOne
• Also consider existing training opportunities
• Catalog current standards, and brainstorm
what should be included in future JH policy
• Create three working groups to meet outside
of interest group meeting times
Best Practices Initiative Continued
• Kelly Crowley can help to create email distribution
lists, build collaborative web space, and find
available conference rooms
• Groups should report back to advisory board;
solicit their input and help, as well as from other
interest group members
• Short term goal: Scheduling working groups
meetings; First draft of guidelines by the end of
the academic year
• Long term goal: Create modules to be included in
IRB approval process
Barriers Identified in
Best Practices Survey April 2014
What’s not working?
• Don’t know how to talk
to when I have questions
• Need a direction of “who
to contact” for further
information
• No interaction beyond
month presentations
• Need central location for
resources on the intranet;
more networking
opportunities
Suggestions going forward:
• Very focused on SOM, not
the resources I have in SON
• We could become a more
formal group than just an
“interest groups.” We could
work more to bring
together a working
community of analysts
• Create open forums
• Ask audience to help solve
problems they face
Interest Group Web Resources
• ICTR Data Management Interest
Group Presentation webinars and
slide sets
• ICTR Data Management Interest
Group SharePoint site
• Listserv :
datamgrs@lists.johnshopkins.edu
Goals for Today
• Receive summary of what each
breakout group discussed on
September 5
• Continue breakout discussions
• Agree on next steps for working
groups
*Note: We will return to our regular
format next month
Data
Backup and
Security
Group Leader:
Scott Carey
Backup and Security Summary
Discussion Points
• Backup Models
• What University/Enterprise Services are Available?
• Documentation of Backups
• Who is Responsible?
• Securing Shared Data
• Existing Policies?
Areas a Policy Could Address
Data Backup
• How Often (daily, weekly, monthly…)
• Type (incremental, full…)
• Media (tape, cd, disk)
• Retention Period?
• Where are they stored?
• Security / Encryption?
Areas a Policy Could Address
Data Security
Data• Identifying
Documentation
WhatSubtle
type ofIdentifiers
documentation is needed to
Obvious and
describe the shared data?
• Who has permission to access data
Procedures
Need to have documentation of the
• HIPAA Waivers?
metadata associated with the archive
• Where does data reside?
Financial
How will the archiving be funded?
• How is it secured?
• Existing Security Policies
(http://www.it.johnshopkins.edu/policies/)
Plan for Today:
Identifying Best Practices
• Create high-level outline of a policy document around data
archiving and sharing
• Gather best practices
• Note existing resources, website, people
• Note where expertise is unknown
• Record definitions around key terms (e.g., data
destruction)
• Project plan work (parsing of tasks, timelines, etc.)
Data
Archiving
and Sharing
Group Leader:
Betsy Gunia
Process Summary
Broke into 3 subgroups to discuss definitions for and
provide personal examples of activities around the
following concepts:
• Data sharing (i.e., when you give data)
• Data reuse (i.e., when you receive data)
• Digital preservation/data destruction
Areas a Policy Could Address
Data Sharing
Data Documentation
What type of documentation is needed to
describe the shared data?
De-identification
How do you ensure that the data is fully deidentified and re-identification is not
possible?
Data ownership and rights Issues of data ownership when sharing: If a
researcher is given data by another entity,
can THAT data be shared along with the
data collected by the researcher?
Procedures
Researchers should always keep a copy of
the original consent form when sharing
data
Areas a Policy Could Address
Data Archiving
Data Documentation
What type of documentation is needed to
describe the shared data?
Procedures
Need to have documentation of the
metadata associated with the archive
Financial
How will the archiving be funded?
Plan for Today:
Identifying Best Practices
• Create high-level outline of a policy document around data
archiving and sharing
• Gather best practices
• Note existing resources, website, people
• Note where expertise is unknown
• Record definitions around key terms (e.g., data
destruction)
• Project plan work (parsing of tasks, timelines, etc.)
Data
Management
and Planning
Group Leader:
Sharon Ghazarian
Notes from 9/5/14 Breakouts
• Discussion around important considerations prior
to the study beginning
– Most efficient use of data
– Clear idea of database structure
– Make sure a protocol exists and includes data
management details
– Create templates or boiler plates for use
– Have clear idea of final goals
– Discuss how data will be stored and secured
Notes from 9/5/14 Breakouts
• Action Items
– SharePoint site with areas to populate
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Examples of protocols already in use
Example templates
Example data dictionaries
Roadmaps
Checklists
Subway Map
Welch Center Resources
Pharma requirements
List of questions to ask a PI before a study begins
Phone-a-Friend
Next Steps
• Populate SharePoint site
• Examine entries and collate
• Begin putting together draft of guidelines
10/28/14 Plans
• Brainstorm key terms/definitions pertinent to data
management and planning for inclusion in draft
guidelines
• List of resources to include in draft guidelines
pertinent to data management and planning
• Discuss collating existing resources and format of
draft documents
– Draft timeline and assignment of key sections
– Plan for group meetings outside of the larger format
Breakout Rooms
•A) Data Management
Planning – Rm 9
•B) Data Sharing and
Archiving – Rm 305
•C) Data Backup and
Security – Rm 10