hi, here are the notes from the discussion today for the task group concerning output C, resources for stakeholders.
RDA/NISO Privacy Implications of Research Data Sets IG
Task Group, Output C: Resources for Stakeholders
Meeting, July 6, 2017
Present: Todd Carpenter, Lisa Hinchliffe, Sebastian Karcher, Dessi Kirilova, Nettie Lagace, Sara Mannheimer, Shea Swauger
This is the first meeting of this ‘arm’ of the task group since P9 in Barcelona. See links below for notes from previous meetings for people working on this topic of resources for stakeholders. So we are trying to catch up and regroup – hence the discussion covered some previous ground, but also set the table for topics to be further discussed and decided on the next call, Monday July 17 at 11 am Eastern/5 pm Europe. All are welcome; participation in this group is always open!
Action Items to discuss next call:
• Review stakeholders and finalize audience
• Determine outputs (even limited due to time, if necessary)
– linking to resources
– providing further analysis
– creating tool kits
• Assignments
• Timing/scheduling for further meetings
Resources:
• Working document/TG C work: https://docs.google.com/document/d/1kdjsd9SBx-6PYgjzvu8OxJTgUDFYVoA1IGGi…
• outline for Task Group C in https://docs.google.com/document/d/1fOX0jrU8NJdbgrnXkwV7gAeeR90xnhk-XkUA… – this version includes brainstorming notes made by participants in Barcelona
• Notes from December 16 meeting: https://docs.google.com/document/d/16OdYuu_urw4hiTA64Qvm-9E–Gcx-fYapyk6…
• Notes from January 11 meeting: https://docs.google.com/document/d/1bV7IfY1ztqKiLAVTvv1DaqjOo-YOME_-eZAh…
• RDA wiki: https://www.rd-alliance.org/group/rdaniso-privacy-implications-research-…
• Google folder: https://bitly.com/PrivacyRDA
Discussion:
What categories/kinds of resources is this task group collecting?
What stakeholders have been identified, which might affect categories?
Potential audiences:
guidance for researchers, for administrators, institutional review boards who review data or policies, repository managers
All have different needs and expectations.
Prioritization of categories might thus become an item for discussion by the group.
No specific audience – a good way to frame, but no right/wrong answers.
One lens could be, who is the policy directed towards?
Gather policies, summarize and extract consistent themes and guidance for future policy drafting re geography/regulations.
Document types:
Policy and guidance documents
About what and how to gather – only a starting point
1. create repositories of policies – to help people create/design their own
2. key elements/theories
3. provide guidance based on these – what you should consider across the board
What are areas where we need policies?
• managed access to data/consent forms
• will be different for each institution and researcher
• how to build in these conditions? e.g. create a tool to help determine CC license.
Lots of variable characteristics re data, repository, institutional types. E.g. John Wilbanks heuristics
There may be little value re individual researchers due to the breadth of context present in this work, but also due to the way that RDA is set up. Even if we come to a high level set of advice it’s not clear how that might be promulgated to individual researchers. Institutions might be a better target but still there’s a question about what level. How to limit our focus. E.g. focus on repository managers.
How does this dicussion relates to the previous task group make-up and work that has already been done? There were action items that people had started working on. Some questions were settled.
See notes:
• Notes from December 16 meeting: https://docs.google.com/document/d/16OdYuu_urw4hiTA64Qvm-9E–Gcx-fYapyk6…
• Notes from January 11 meeting: https://docs.google.com/document/d/1bV7IfY1ztqKiLAVTvv1DaqjOo-YOME_-eZAh…
• Outline for Output C at https://docs.google.com/document/d/1fOX0jrU8NJdbgrnXkwV7gAeeR90xnhk-XkUA…
What is the connection with NISO? Many of us are not associated with NISO. How do we fit into a group that has NISO as part of its name? NISO has been involved in previous data efforts. We had been doing some work in privacy, specifically patron privacy. The Mellon foundation funded that work, and was interested in how privacy and research data interrelated. Grew organically out of conversations within RDA about need for privacy. Was conceived of as a group within RDA. Same way that WDS is co-chair of a few WGs as is CODATA. Not ownership or membership. NISO wanted to support RDA in this way. Some NISO members are members of RDA who have research data repositories.
Some questions I hear at my institution:
Research design/methods taught in courses, but principles that have privacy (as a value) built in; how to get meaningful informed consent – SAGE Bionetworks has a nice toolkit for clinical work.
for repository managers/technologists – anonymization, decryption, contextual policies
where do we need more scrutiny in this? Tell what people should pay more attention to
There has been gathering of consent documents from different institutions. Even pulling out general principles – or we could have templates that you can pull from.
Here are tools that help you anonymize data in an effective way.
Here is a list of principles.
Do we link out or are we trying to identify things that are present/not present?
There is greater value is in doing the latter, but it may require additional skillsets from the task group.
Example: re consent form data – org was collecting for a different purpose
we want to look at the degree to which these templates, which are intended by guidance for an institutions’ own researchers – degree to which they address data sharing (narrower question than the group)
What skill sets are needed from task group members? How can task group members contribute?
Some outputs will not require all kinds of expertise. Example: that SAGE toolkit – it walks you through ideas for how to make something participant-centered… Something like that is within the group’s abilities.
The overall interest group consists of almost 85 individuals! Presumably this roster possesses a broad range of skills and expertise. The task group can reach out to them. Ask, does anyone have skillset X or perspective on Y.
Could we get funding from Mellon or another foundation to build something? Maybe in the longer term, after some initial work has been completed.
Perhaps more practical in the short term: We could identify resources that exist and identify gaps and document them. Not the same as filing the gap but just documenting it is a good outcome.
Meetings between now and September should focus on milestones that could be reached in the near term, to provide something to report on at P10 in Montreal.
Regarding future meetings:
The NISO conference line is always available but it’s telephone-only. The group may like to see each other while meeting, for a more ‘personal’ touch.
Google Hangouts are limited to 15 members. Skype supports 25 but no video. (https://community.skype.com/t5/Windows-archive/Number-of-participants-al…) NISO could support a WebEx webinar where people could share desktops, but again, no video.
Next scheduled meeting:
Monday, July 17, 11 am Eastern US/5 pm Europe
US: preferred 973-935-2037 / backup 1-877-375-2160
UK: preferred 020-3107-0236 / backup 080-8234-8621
Global numbers can be found via http://bit.ly/niso-dialin
Conference code: 10711493
Further meetings to be discussed on this call.