On September 14, 2015 in Berne, the Swiss National Science Foundation are organizing a workshop on Open Data in Science, to which this document is a contribution.
- Solutions to collective action problems often involve both top-down and bottom-up efforts
- example: Dagen H
- clear role for funders
- glad that the SNSF are taking initiative here.
- Collective action: fifty years later
- EU Consultation: not just a renaming from 'Science 2.0' to 'Open Science' but hopefully a shift in focus towards as well, rather than open washing
- Integrate sharing within research and beyond (cf. Paul Ayris' talk)
A vision for Open Data at NIH
- inspired by The Vision for Data @ the NIH
CC0/ Public Domain; all kinds of sharing and feedback welcome; attribution appreciated
- National Institutes of Health in Bethesda, Maryland, USA
- a Federal Agency within the Department of Health and Human Services (HHS)
- the world's largest biomedical research agency
- NIH Mission
- Associate Director for Data Science (ADDS)
- to "provide input to the overall NIH vision and actions undertaken by each of the 27 Institutes and Centers in support of biomedical research as a digital enterprise"
- ADDS website
- cross-disciplinary, e.g.
- field-specific, e.g.
- Bermuda principles for human genome sequencing
- Policy memorandum by John Holdren, Director of the White House Office of Science and Technology Policy, "direct[ing] Federal agencies with more than $100M in R&D expenditures to develop plans to make the results of federally funded research freely available to the public". (Feb 2013)
- SPARC overview of responses (regularly updated)
- Apart from NIH, three agencies so far (AHRQ, NASA, NIST) opted for an approach based on PubMed Central for handling the literature part
- NIH policies on access and sharing
- NSF policy
- several of these agencies envision a "research data commons"
- SPARC overview of responses (regularly updated)
- Executive Order by President Obama: Making Open and Machine Readable the New Default for Government Information (May 2013)
- Personalized Medicine Initiative
- Precision Medicine Initiative (PMI) Working Group Report to the Advisory Committee to the Director, NIH to be published this week
- UPDATE: report has been published
- Precision Medicine Initiative (PMI) Working Group Report to the Advisory Committee to the Director, NIH to be published this week
- Blue button
- Rehabilitation Act, Section 508
- Public Access
- Common Rule
- US agencies plan research-ethics overhaul (cf. Robert Terry's talk)
- NIH Public Access Policy (mandatory since April 2008)
- supported by dedicated infrastructure, in particular PubMed Central
- FAQ
- NIH Data Sharing Policy
- NIH Model Organism Sharing Policy (cf. Sabina Leonelli's talk)
- NIH Genomic Data Sharing Policy
- Policy for Sharing of Data Obtained in NIH Supported or Conducted Genome-Wide Association Studies (GWAS)
- The Cloud, dbGaP and the NIH
- Sex as a Biological Variable
- Enhancing Reproducibility through Rigor and Transparency (cf. Daniël Lakens' talk)
- A vision for open data at NIH
- The Commons
- Data citation (cf. Robert Terry's talk)
- Data discoverability
- also for software and other research outputs
- intramural/ extramural
- 27 of them, e.g. the National Library of Medicine (NLM)
- The report on the strategic vision for the National Library of Medicine recommends that NLM should
- "be a leader and innovator in open science efforts worldwide"
- "lead efforts to support and catalyze open science, data sharing, and research reproducibility, striving to promote the concept that biomedical information and its transparent analysis are public"
- and, in particular, "lead efforts to promulgate and implement best practices in open source, open science, standards, and data harmonization, forming partnerships across communities, stakeholder organizations, agencies, and countries" as well as "be an active participant in the design and oversight of programs that incentivize and celebrate the open sharing of data and resources."
- Rise of the citizen scientist
- NIH databases on Wikidata
- Wikipedia Emerges as Trusted Internet Source for Ebola Information (cf. Robert Terry's talk)
- Patient-led innovation
- Patient peer review
- E-consent
- Patient data sharing demo
- Open responses to emergencies (cf. Robert Terry's talk)
- What about using preprints, or thinking of "reviewables" rather than "publications"?
- What about funders leading the research community by example in terms of being more open in the way they work?
- Open data from funders might help research about research funding.
- public and machine readable data management plans
- could serve as a discovery tool
- might help with the compliance element too
- What would happen if grant reviews were made public?
- Encouraging the reuse of public data
- Streams of public events
- Content mining
- ContentMine (cf. Martin Vetterli's introduction)
- Open Access Media Importer (cf. Michael Rieser's talk)
- Suggestbot
- Data-driven journalism
- interpret the term data broadly
- go for immediate sharing as the default
- don't allow for embargoes but for exceptions
- require public justification (i.e. open data) about these exceptions
- don't allow for embargoes but for exceptions
- make it machine readable
- put it under an open license