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Data-related Advocacy

IASSIST's Statement in Response to President’s Executive Order on Visas and Immigration


February 13, 2017

Statement of the International Association for Social Science Information Services and Technology (IASSIST at http://iassistdata.org) in response to President Trump's January 27 Executive Order on Visas and Immigration, titled "PROTECTING THE NATION FROM FOREIGN TERRORIST ENTRY INTO THE UNITED STATES".

The recent executive order on visas and immigration issued on January 27th by US President Trump is of grave concern to IASSIST as an organization. IASSIST, the International Association for Social Science Information Services and Technology, is an international organization of professionals working in and with information technology, libraries, data services and research & higher education to support open science, advocate for responsible data management and use, build a broader community surrounding research data, and encourage the development of data professionals. Our membership is international, and we greatly value the ability to travel and meet to share knowledge at locations around the world. Our international fellows program and other initiatives are specifically designed to encourage participation from underrepresented regions, including the Muslim-majority countries targeted by the executive order.

While recognizing the authority of the United States over its borders, there are several aspects of this order that are troubling, viz.:

  1. Its sudden and chaotic implementation has led to severe uncertainty over whether rules and practices for entering the United States will be subject to rapid and arbitrary change.
  2. It has led to the detention of lawful permanent residents of the United States, the revocation of visas previously granted under proper vetting procedures, the perception of potential discrimination on the basis of religion, and the humanitarian crisis caused by ceasing to accept refugees.
  3. Its introduction of several restrictive elements into the domain of visas and immigration, such as the statement that those entering the US, including temporary visitors, must "support the Constitution".

For these reasons, the order generates a hostile climate for the open, collaborative scientific work of our organization, both for non-US persons seeking to work and collaborate with Americans, and for Americans traveling and working outside of the US to collaborate who may face retributive actions from other states. Our membership has legitimate concerns about whether travel to the US is possible under such conditions. The order also may have long-term repercussions that damage the reputation of the US as a location that is open to visitors and immigrants, supporting the open exchange of ideas, and protected under the rule of law from arbitrary changes impacting human freedom. In response, IASSIST will continue to speak out in favor of our organization's goals, and against such threats to international collaboration in research and data sharing.

Our May 2017 annual conference will be held in Lawrence, Kansas. Arrangements were begun long before the Executive Order on Visas and Immigration, and it is impossible to change the venue at this date. IASSIST stands in solidarity with its members and encourages them to attend the conference and participate in the international exchange of ideas that is the purpose of our association. We hope that no member will be denied entry into the US due to the administration's recent actions. IASSIST will assist its membership with visa issues and other concerns emanating from this order. We also reaffirm that we are committed to an environment free from discrimination, harassment, and retaliation, at the annual conference and all IASSIST activities.

 Tuomas J. Alaterä, President
 Jen Green, Vice-President
 Ryan Womack, Secretary
 Thomas Lindsay, Treasurer

International Association for Social Science Information Service and Technology (IASSIST)

Interested in the “data revolution” and what it means for research? Here’s why you should attend IASSIST2016

 

Part 1: Data sharing, new data sources and data protection

IASSIST is an international organisation of information technology and data services professionals which aims to provide support to research and teaching in the social sciences. It has over 300 members ranging from data archive staff and librarians to statistical agencies, government departments and non-profit organisations.

The theme of this year’s conference is Embracing the ‘data revolution’: opportunities and challenges for research” and it is the 42nd of its kind, taking place every year. IASSIST2016 will take place in Bergen, Norway, from 31 May to 3 June, hosted by NSD - Norwegian Centre for Research Data.

Here is a first snapshot of what is there and why it is important.

Data sharing

If you have ever wondered whether data sharing is to the advantage of researchers, there will be a session led by Utrecht University Library exploring the matter. The first results of a survey which explores personal beliefs, intention and behaviour regarding the sharing of data will also be presented by GESIS. The relationship between data sharing and data citation, relatively overlooked until now, will then be addressed by the Australian Data Archive.

If you are interested in how a data journal could incentivise replications in economics, you should think about attending a session by ZBW Leibniz Information Centre for Economics which will present some studies describing the outcome of replication attempts and discuss the meaning of failed replications in economics.

GESIS will then look into improving research data sharing by addressing different scholarly target groups such as individual researchers, academic institutions, or scientific journals, all of which place diverse demands on a data sharing tool. They will focus on the tools offered by GESIS as well as a joint tool, “SowiDataNet”, offered together with the Social Science Centre Berlin, the German Institute for Economic Research, and the German National Library of Economic.

The UKDA and UKDS will present a paper which seeks to explore the role that case studies of research can play in regard to effective data sharing, reuse and impact.

The Data Archive in Finland (FSD) will also be presented as a case study of an archive that is broadening its services to the health sciences and humanities, disciplines in which data sharing practices have not yet been established.

If you’d like to know more about data accessibility, which is being required by journals and mandated by government funders, join a diverse group of open data experts as IASSIST dives into open data dialogue that includes presentations on Open Data and Citizen Empowerment and 101 Cool Things to do with Open Data as part of the “Opening up on open data workshop.” Presenters will be from archives from across the globe.

New data sources

A talk entitled “Data science: The future of social science?” by UKDA will introduce its conceptual and technical work in developing a big data platform for social science and outline preliminary findings from work using energy data.

If you have been wondering about the role of social media data in the academic environment, the session by the University of California will include an overview of the social media data landscape and the Crimson Hexagon product.

The three Vs of big data, volume, variety and velocity, are being explored in the “Hybrid Data Lake” being built by UKDA using the Universal Decimal Classification platform and expanding “topics” search while using big data management. Find out more about it as well as possible future applications.

Data protection

If you follow data protection issues, the panel on “Data protection: legal and ethical reviews” is for you, starting off with a presentation of the Administrative Data Research Network's (ADRN) Citizen's Panel, which look at public concerns about research using administrative data, the content of which is both personal and confidential. The ADRN was set up as part of the UK Government’s Big Data initiative as a UK-wide partnership between universities, government bodies, national statistics authorities and the wider research community.

The next ADRN presentation within this session will outline their application process and the role of the Approvals Panel in relation to ethical review. The aim is “to expand the discussion towards a broader reflection on the ethical dilemmas that administrative data pose”, as well as present some steps taken to address these difficulties.

NSD will then present the new EU General Data Protection Regulation (GDPR), recently adopted at EU level, and explain how it will affect data collection, data use, data preservation and data sharing. If you have been wondering how the regulation will influence the possibilities for processing personal data for research purposes, or how personal data are defined, what conditions apply to an informed consent, or in which cases it is legal and ethical to conduct research without the consent of the data subjects, this presentation is for you.

The big picture

Wednesday 1 June will kick-off with a plenary entitled “Data for decision-makers: Old practice - new challenges” by Gudmund Hernes, the current president of the International Social Science Council and Norway’s former Minister of Education and Research 1990-95, and Minister of Health 1995-97.

The third day of the conference (2 June) will begin with a plenary - “Embracing the ‘Data Revolution’: Opportunities and Challenges for Research’ or ‘What you need to know about the data landscape to keep up to date”, by Matthew Woollard, Director of the UK Data Archive at the University of Essex and Director of the UK Data Service.

If you want to know more about the three European projects under the framework of the Horizon 2020 programme of the European Commission that CESSDA is involved in, one on big data (Big Data Europe - Empowering Communities with Data Technologies), another on - strengthening and widening the European infrastructure for social science data archives (CESSDA SaW) and a third on synergies for Europe's Research Infrastructures in the Social Sciences (SERISS), this panel is for you.  

"Don't Hate the Player, Hate the Game": Strategies for Discussing and Communicating Data Services” considers how libraries might strategically reconsider communications about data services.

Keep an eye on this blog for more news in the run-up to IASSIST2016.

Find out more on the IASSIST2016 website.

Spread the word on Twitter using #IASSIST16.

We are looking forward to seeing you in Bergen! 


A story by Eleanor Smith (CESSDA)

“You can’t have a democratic society, without having a good data base.”

Janet L. Norwood, former US Bureau of Labor Statistics commissioner, dies

On the passing of this iconic defender of the neutrality of public data, I am struck how important Janet Norwood was to establishing a sound path for data advocacy as well as reminded of how necessary it is to have continuous education about this topic.  In fact, swimming in ready-access to data as we are today, it's especially important that we, as data professionals, remain alert to and defend a couple of aphorisms:

  • Stay true to the facts; Zealously retain non-partisan associations in the recording of all public data, analyses and reporting.
  • Use it for GOOD -- never for EVIL”  Encourage the use of public data for the public good.

 In reviewing the memorials to Janet Norwood, a couple of succinct statments seem apt (in addition to the heading of this post).

Simply put, all U.S. policy makers, businesses and families can make better decisions every day because of Janet Norwood’s work at B.L.S. ~Erica L. Groshen, the bureau’s current commissioner

“I believe strongly,” said economist Janet L. Nowood, “that an objective, scientifically created system of data is essential for a democracy to flourish.” ~ Democracy’s Statistician: Janet L. Norwood, 1923-2015 By Social Science Space.

~Paula Lackie (Carleton College & cochair of the IASSIST Professional Development Committee)

A decade against decay: the 10th International Digital Curation Conference

The International Digital Curation Conference (IDCC) is now ten years old. On the evidence of its most recent conference, is in rude health and growing fast.

IDCC is the first time IASSIST decided to formally support another organisational conference. I think it was a wise investment given the quality of plenaries, presentations, posters, and discussions.

DCC already has available a number of blogs covering the substance of sessions, including an excellent summary by IASSIST web editor, Robin Rice. Presentations and posters are already available, and video from plenary sessions will soon be online.

Instead I will use this opportunity to pick-up on hanging issues and suggestions for future conferences.

One was apportionment of responsibility. Ultimately, researchers are responsible for management of their data, but they can only do so if supporting infrastructure is in place to help them. So, who is responsible for providing that: funders or institutions? This theme emerged in the context of the UK’s Engineering and Physical Sciences Research Council who will soon enforce expectations identifying the institution as responsible for supporting good Research Data Management.

Related to that was a discussion on the role of libraries in this decade. Are they relevant? Can they change to meet new challenges? Starting out as a researcher who became a data archivist and is now a librarian, I wouldn’t be here if libraries weren’t meeting these challenges. There’s a “hush” of IASSIST members also ready to take issue with the suggestions libraries aren’t relevant or not engaged with data, in fact they did so at our last conference.

Melissa Terras, (UCL) did a fantastic job presenting [PDF] work in the digital humanities that is innovative in not only preserving, but rescuing objects – and all done on small change research budgets. I hope a future IDCC finds space for a social sciences person to present on issues we face in preservation and reuse. Clifford Lynch (CNI) touched on the problems of data reuse and human subjects, which remained one of the few glancing references to a significant problem and one IASSIST members are addressing. Indeed, thanks must go to a former president of this association, Peter Burhill (Edinburgh) who mentioned IASSIST and how it relates to the IDCC audience on more than one occasion.

Finally, if you were stimulated by IDCC’s talk of data, reuse, and preservation then don’t forget our own conference in Minneapolis later this year.

IASSIST Fellows 2014

The IASSIST Fellows Committee is glad to announce through this post the four recipients of the 2014 IASSIST Fellowship award. We are extremely excited to have such a diverse and interesting group with different backgrounds and experience and encourage IASSISTers to welcome them at our conference in Toronto, Canada.
Please find below their names, countries and brief bios:

Antonin Benoit, Head Librarian at the African Institute for Economic Development and Planning. Dakar, Senegal.

"As the head Librarian I am the manager of our Online Database called IDEP document server (http://www.unidep.org/library). We provide via this tool an access to bibliographical and textual references. In another hand I am the a focal point of IDEP to work with African Centre of Statistics (ACS) to compile an Inventory of all existing data resources in my Institute. The ACS is a division of UNECA and it is located in Addis Ababa (Ethiopia). I am then devoted to provide data used for statistical analysis and publications in the Existing Data Resources of UNECA (http://ecastats.uneca.org/cdsr/). I am also very familar with metadata standards like MarcXML and Dublin Core that I use frequently in my job through our Document server. My main objective is to make our Institute the first African Library catalog to enter the Open Linked Data project. So, attending the IASSIST conference could improve my capacities on data management, because my initial professional background is Librarianship and I still have some weaknesses on data management"

Fei Yu, Acting Manager of Research Data Collections  at the University of Queensland Library. Brisbane, Australia.

"Fei has gained a wide range of experience in academic libraries including bibliometrics and research data management.  She was recently successful in being appointed as Manager, Research Data Collections.  This has involved drafting  the Research Data Management Procedures which will underpin the University of Queensland Research Data Management Policy that was approved at the end of 2013.  She is involved in promoting best practice in data management for all of UQ and has established a wide range of Data Information Literacy training courses for UQ researchers and ensuring that their research data collection metadata is accurate and available on the institutional repository - UQ eSpace.  She is presently rolling out the online data management tool (based on the UK Digital Curation Center (DCC) tool) university wide to ensure that all university researchers and research students have an easy and accessible tool to create their data management plans.  The Research Data Collections team lead by Fei created the Research Data Management Guide  - a one stop shop – containing detailed information on all aspects of data management.  Fei also works collaboratively with the University's Research Computing Centres and the Queensland Cyber Infrastructure to ensure that staff are aware of the many data storage options. "

Aileen O'Carroll, Policy Manager of the Digital Repository at the Digital Repository of Ireland. Dublin, Ireland.

"I am currently Policy Manager of the Digital Repository of Ireland (DRI). DRI is a newly established national organisation (the project was established in September 2011) whose remit is to link together and preserve the rich and varied cultural, historical, and qualitative social science data held by Irish Institutions. It will be a central access point to this digital data and provide multimedia tools to research and interact with archived data. My role requires me to have a thorough understanding of international best practice in licensing frameworks, digitisation policy, archival management, and an understanding of the different needs and perspectives of a wide range of stalk-holders and users. It is of key importance that this emerging national infrastructure is aligned both with European and International best practice along with practice and policy already in place in a diverse field of Irish cultural, educational and social scientific organisations."

Winny Nekesa, Senior Library and Documentation Officer at the Public Procurement and Disposal of Assets Authority. Kampala, Uganda.

"Winny Nekesa Akullo obtained a Bachelors degree in Library and Information Science in 2003, Postgraduate Diploma in Demography in 2014 from Makerere University and finalized her thesis for the  Masters Degree in Information Science. Before joining the Public Procurement and Disposal of Public Assets Authority as a Senior Library and Documentation Officer in 2014, she worked as an Information Officer/Librarian at Uganda Bureau of Statistics where she was in charge of information management and data dissemination and was spearheading the establishment of a UBOS Digital Library and a School Senior Librarian. She has international training and exposure in establishing digital libraries, preservation and construction and application of information systems. She is the Country Coordinator of the International Librarians’ Network, Publicity Secretary, Uganda Library and Information Association and the General Secretary, Uganda Textbook-Academic and Non-Fiction Authors’ Association.  Her area of expertise is digital preservation and data dissemination. Currently her main research interests are information retrieval, digital preservation and open access repositories. She presented at the 2013 IASSIST Conference “Establishing a National Statistical Information Repository in Uganda; Challenges and Opportunities”  she got a lot of exposure, and new ideas about data and information management. This year, I hope to gain more information which I can apply to my new institution especially in the area of data management which is still virgin."

White Paper Urges New Approaches to Assure Access to Scientific Data

Press release posted on behalf of Mark Thompson-Kolar, ICPSR.

12/12/2013:  (Ann Arbor, MI)—More than two dozen data repositories serving the social, natural, and physical sciences today released a white paper recommending new approaches to funding sharing and preservation of scientific data. The document emphasizes the need for sustainable funding of domain repositories—data archives with ties to specific scientific communities.

“Sustaining Domain Repositories for Digital Data: A White Paper,” is an outcome of a meeting convened June 24-25, 2013, in Ann Arbor. The meeting, organized by the Inter-university Consortium for Political and Social Research (ICPSR) and supported by the Alfred P. Sloan Foundation, was attended by representatives of 22 data repositories from a wide spectrum of scientific disciplines.

Domain repositories accelerate intellectual discovery by facilitating data reuse and reproducibility. They leverage in-depth subject knowledge as well as expertise in data curation to make data accessible and meaningful to specific scientific communities. However, domain repositories face an uncertain financial future in the United States, as funding remains unpredictable and inadequate. Unlike our European competitors who support data archiving as necessary scientific infrastructure, the US does not assure the long-term viability of data archives.

“This white paper aims to start a conversation with funding agencies about how secure and sustainable funding can be provided for domain repositories,” said ICPSR Director George Alter. “We’re suggesting ways that modifications in US funding agencies’ policies can help domain repositories to achieve their mission.”

Five recommendations are offered to encourage data stewardship and support sustainable repositories: 

  •  Commit to sustaining institutions that assure the long-term preservation and viability of research data
  • Promote cooperation among funding agencies, universities, domain repositories, journals, and other stakeholders 
  •  Support the human and organizational infrastructure for data stewardship as well as the hardware
  •  Establish review criteria appropriate for data repositories
  • Incentivize Principal Investigators (PIs) to archive data

While a single funding model may not fit all disciplines, new approaches are urgently needed, the paper says.

“What’s really remarkable about this effort—the meeting and the resulting white paper—has been the consensus across disciplines from astronomy to archaeology to proteomics,” Alter said. “More than two dozen domain repositories from so many disciplines are saying the same thing: Data sharing can produce more science, but data stewards must know the needs of their scientific communities.”

This white paper is a must read for anyone who wants to understand the role of scientific domain repositories and their critical role in the advancement of science. It can be downloaded at http://datacommunity.icpsr.umich.edu

 

The Inter-university Consortium for Political and Social Research (ICPSR), based in Ann Arbor, MI, is the largest archive of behavioral and social science research data in the world. It advances research by acquiring, curating, preserving, and distributing original research data. www.icpsr.umich.edu

The Alfred P. Sloan Foundation is a philanthropic, not-for-profit grantmaking institution based in New York City. Established in 1934, the Foundation makes grants in support of original research and education in science, technology, engineering, mathematics, and economic performance. www.sloan.org

###

Scientific Data Repositories Issue Call for Change on Funding Models for Data Archives

For Immediate Release
September 16, 2013
Contact: Mark Thompson-Kolar, 734-615-7904
mdmtk@umich.edu

(Ann Arbor, MI) — Representatives of 25 organizations that archive scientific data today released a Call for Action urging the creation of sustainable funding streams for domain repositories — data archives with close ties to scientific communities.

The document was developed after a meeting of data repositories across the social and natural sciences June 24-25, 2013, in Ann Arbor. The meeting was organized by the Inter-university Consortium for Political and Social Research (ICPSR) at the University of Michigan and supported by the Alfred P. Sloan Foundation to discuss challenges facing domain repositories, particularly in light of the February 2013 memorandum from the U.S. Government’s Office of Science and Technology Policy (OSTP) requiring public access to federally funded data.

Domain repositories in the natural and social sciences are built upon close relationships to the scientific communities that they service. By leveraging in-depth knowledge of the subject matter, domain repositories add value to the stored data beyond merely preserving the bits. As a result, repositories contribute to scientific discovery while ensuring that data curation methods keep pace as science evolves. “However, the systems currently in place for funding repositories in the US are inadequate for these tasks,” the document states.

The Call for Action argues that “Domain repositories must be funded as the essential piece of the US research infrastructure that they are,” emphasizing the importance of:

•    Ensuring funding streams that are long-term, uninterrupted and flexible
•    Creating systems that promote good scientific practice
•    Assuring equity in participation and access

The document expresses concerns regarding current and future funding models in consideration of the OSTP rules. “The push toward open access, while creating more equity of access for the community of users, creates more of a burden for domain repositories because it narrows their funding possibilities.”

“We are memory institutions,” ICPSR Director George Alter said. “One of our missions is to ensure data will be available for a long time, yet we’re being funded by short-term grants. There is a mismatch between our mission and the way we are funded. Widening access to data is a good thing. Everyone agrees on that. But it has to be done in a way that provides sustainable funding to the organizations that preserve and distribute the data.”

Repositories may require varied funding models, based on their scientific domain, the document states. “But in every case, creating sustainable funding streams will require the coordinated response of multiple stakeholders in the scientific, archival, academic, funding, and policy communities.”

The statement is endorsed by 30 domain repository representatives. It can be viewed on the ICPSR’s website at http://tinyurl.com/dataarchives.

The Inter-university Consortium for Political and Social Research (ICPSR), based in Ann Arbor, MI, is the largest archive of behavioral and social science research data in the world. It advances research by acquiring, curating, preserving, and distributing original research data. www.icpsr.umich.edu

The Alfred P. Sloan Foundation is a philanthropic, not-for-profit grantmaking institution based in New York. Established in 1934, the Foundation makes grants in support of original research and education in science, technology, engineering, mathematics, and economic performance. www.sloan.org

Posted by request to the editor, in line with IASSIST members' interests.

IASSIST Fellows 2013

 

The IASSIST Fellows Committee is glad to announce through this post the six recipients of the 2013 IASSIST Fellowship award. We are extremely excited to have such a diverse and interesting group with different backgrounds and experience and encourage IASSISTers to welcome them at our conference in Cologne, Germany.

Please find below their names, countries and brief bios:

Chifundo Kanjala (Tanzania) 

Chifundo currently works as a Data Manager and data documentalist for an HIV research group called ALPHA network based at London School of Hygiene and Tropical Medicine's department of Population Health, Chifundo spends most of his time in Mwanza, Tanzania but do travel from time around Southern and Eastern Africa to work with colleagues in the ALPHA network.Before joining the London School of Hygiene and Tropical Medicine, he was working as a Data analyst consultant at Unicef, Zimbabwe.Currently working part time on a PhD with London school of Hygiene and Tropical Medicine. He has an MPhil in Demography from university of Cape Town, South Africa and a BSc Statistics Honours degree from University of Zimbabwe.


Judit Gárdos (Hungary) 

Judit Gárdos studied Sociology and German Language and Literature in Budapest, Vienna and Berlin. She is PhD-candidate in sociology, with a topic on the philosophy, sociology and anthropology of quantitative sociology. She is young researcher at the Institute of Sociology of the Hungarian Academy of Sciences. Judit has been working at the digital archive and research group called "voicesofthe20century.hu" that is collecting qualitative, interview-based sociological research collections of the last 50 years. She is coordinating the work at the newly-funded Research Documentation Center of the Center for Social Sciences at the Hungarian Academy of Sciences.


Cristina Ribeiro (Portugal) 

Cristina Ribeiro is an Assistant Professor in Informatics Engineering at Universidade do Porto and a researcher at INESC TEC. She has graduated in Electrical Engineering, holds a Master in Electrical and Computer Engineering and a Ph.D. in Informatics. Her teaching includes undergraduate and graduate courses in information retrieval, digital libraries, knowledge representation and markup languages. She has been involved in research projects in the areas of cultural heritage, multimedia databases and information retrieval. Currently her main research interests are information retrieval, digital preservation and the management of research data.


Aleksandra Bradić-Martinović (Serbia) 

Aleksandra Bradić-Martinović, PhD is the Research Fellow at the Institute of Economic Sciences, Belgrade, Serbia. Her field of expertize is research of information and communication technology implementation in economy, especially in banking, payment system operations and stock exchange operations. Aleksandra is also engaged in education process in Belgrade Banking Academy at the following subjects: E-banking and Payment Systems, Stock Market Dealings and Management Information Systems. She was engaged at several projects in the field of education. At the FP7 SERSCIDA project she is a Serbia team coordinator.


Anis Miladi (Tunisia) 

Anis Miladi earned his Bachelor degree in computer sciences and multimedia in 2007 and a Master degree in Management of Information Systems and organizations in 2008 and he is currently finalizing his master degree in project management(projected date summer 2013). Before joining the Social and Economic Survey Research Institute at Qatar University as Survey Research technology specialist in 2009, he worked as a programmer analyst in a private IT services company In Tunisia. His Area of expertise includes managing computer assisted surveys CAPI,CATI(Blaise surveying system)  in addition to Enterprise Document Management Systems, Enterprise Portals (SharePoint).


Lejla Somun-Krupalija (Sarajevo) 

Lejla currently serves as the Senior Program and Research Officer at the Human Rights Centre of the University of Sarajevo. She has over 15 years of experience in research, policy development in social inclusion issues. She is the Project Coordinator of the SERSCIDA FP7 project that aims to open data services/archives in the Western Balkan region in cooperation with CESSDA members. She had been engaged in the NGO sector previously, particularly on issues of capacity building and policy development in the areas of gender equality, the rights of persons with disabilities and issues of social inclusion and forced migration. She teaches academic writing, qualitative research, and gender and nationalism at the University of Sarajevo. 

IASSISTers and librarians are doin' it for themselves

See video

 

Hey IASSISTers (gents, pardon for the video pun - couldnt' resist),

Are librarians at your institutions struggling to get up to speed with research data management (RDM)? If they're not, they probably should be. Library organisations are publishing reports and issuing recommendations left and right, such as the LIBER (Association of European Research Libraries) 2012 report, "Ten Recommendations for Libraries to Get Started with Research Data Management" (PDF). Just last week Nature published an article highlighting what the Great and the Good are doing in this area: Publishing Frontiers: The Library Reboot.

So the next question is, as a data professional, what are you doing to help the librarians at your institution get up to speed with RDM? Imagine (it isn't that hard for some of us) having gotten your Library masters degree sometime in the last century and now being told your job includes helping researchers manage their data? Librarians are sturdy souls, but that notion could be a bitter pill for someone who went into librarianship because of their love of books, right?

So you are a local expert who can help them. No doubt there will be plenty of opportunities for them to return the favour.

If you don't consider yourself a trainer, that's okay. Tell them about the Do-It-Yourself Research Data Management Training Kit for Librarians, from EDINA and Data Library, University of Edinburgh. They can train themselves in small groups, making use of reading assignments in MANTRA, reflective writing questions, group exercises from the UK Data Archive, and plenty of discussion time, to draw on their existing rich professional experience.

And then you can step in as a local expert to give one or more of the short talks to lead off the two hour training sessions in your choice of five RDM topics.Or if you're really keen, you can offer to be a facilitator for the training as a whole.Either way it's a great chance to build relationships across the institution, review your own knowledge, and raise your local visibility. If you're with me so far, read on for the promotional message about the training kit.

DIY Research Data Management Training Kit for Librarians

EDINA and Data Library, University of Edinburgh is pleased to announce the public release of the Do-It-Yourself Research Data Management Training Kit for Librarians, under a CC-BY licence:

http://datalib.edina.ac.uk/mantra/libtraining.html.

 The training kit is designed to contain everything needed for librarians in small groups to get themselves up to speed on five key topics in research data management - with or without expert speakers.

 The kit is a package of materials used by the Data Library in facilitating RDM training with a small group of librarians at the University of Edinburgh over the winter of 2012-13. The aim was to reuse the MANTRA course developed by the Data Library for early career researchers in a blended learning approach for academic liaison librarians.

 The training comprises five 2-hour face-to-face sessions. These open with short talks followed by group exercises from the UK Data Archive and long discussions, in a private collegiate setting. Emphasis is placed on facilitation and individual learning rather than long lectures and passive listening. MANTRA modules are used as reading assignments and reflective writing questions are designed to help librarians 'put themselves in the shoes of the researcher'. Learning is reinforced and put into practice through an independent study assignment of completing and publishing an interview with a researcher using the Data Curation Profile framework developed by D2C2 at Purdue University Libraries.

 The kit includes:

 * Promotional slides for the RDM Training Kit

* Training schedule

* Research Data MANTRA online course by EDINA and Data Library, University of Edinburgh: http://datalib.edina.ac.uk/mantra

* Reflective writing questions

* Selected group exercises (with answers) from UK Data Archive, University of Essex - /Managing and sharing data: Training resources./ September, 2011 (PDF). Complete RDM Resources Training Pack available: http://data-archive.ac.uk/create-manage/training-resources

* Podcasts (narrated presentations) for short talks by the original Edinburgh speakers (including from the DCC) if running course without ‘live’ speakers.

* Presentation files - if learners decide to take turns presenting each topic.

* Evaluation forms

* Independent study assignment: Data Curation Profile, from D2C2, Purdue University Libraries. Resources available: http://datacurationprofiles.org/

 As data librarians, we are aware of a great deal of curiosity and in some cases angst on the part of academic librarians regarding research data management. The training kit makes no assumptions about the role of librarians in supporting research data management, but aims to empower librarians to support each other in gaining confidence in this area of research support, whether or not they face the prospect of a new remit in their day to day job. It is aimed at practicing librarians who have much personal and professional experience to contribute to the learning experience of the group.

Update from COSSA: Changes to the Common Rule: The Implications for the Social and Behavioral Sciences

This is from the COSSA Newsletter (Consortium of Social Science Associations). March 25, 2013 Volume 32, Issue 6 Regarding a workshop on proposed changes to the Common Rule.  Readers of these blog entries will recall that these proposed changes would require that data identitified in social science research would be required to meet HIPPA standards; potentially rendering many public datasets unuseful for research purposes.

A link to the webcast is here: http://sites.nationalacademies.org/DBASSE/BBCSS/CurrentProjects/DBASSE_080452#Workshop  George Alter spoke on the panel on Data Security and Sharing.

Here is a summary of the COSSA report:

On March 21 and 22, the National Academies' Board on Behavioral, Cognitive, and Sensory Sciences (BBCSS) held a workshop on the "Proposed Revisions to the Common Rule in Relation to the Behavioral and Social Sciences." In 2011, the Department of Health and Human Services proposed changes to the Common Rule, the regulations governing the protection of human subjects in research, in an Advanced Notice of Proposed Rulemaking (ANPRM). (For more information, see Update, January 28, 2013 and click here for a response to the ANPRM from the social and behavioral science community.) Several COSSA member organizations helped sponsor the workshop. More information about the workshop, including presenters' slides and an archived webcast, is available here. BBCSS will publish a summary report of the workshop. According to Robert Hauser, Executive Director of the Division of Behavioral and Social Sciences and Education (DBASSE), the Academies expect to convene a panel a panel that will produce a consensus report with conclusions and recommendations.

 

The workshop's opening session reviewed existing knowledge and evidence about the functioning of the Common Rule and Institutional Review Boards (IRBs). Connie Citro, Director of the Committee on National Statistics at the National Academies, gave an overview of the many National Academies' reports on human subjects protection published since 1979 and summarized the lessons learned. She pointed to four major takeaways from the existing literature. First, one-size-fits-all approaches often have unanticipated negative consequences. Second, there is no need to reinvent the wheel regarding human subjects' protection. Third, a balance needs to be struck between leaving subjects vulnerable and handicapping researchers. Finally, the social and behavioral sciences (SBS) are often not given the same consideration as the biomedical sciences in writing regulations and thus need to be constantly vigilant to make sure that new rules are appropriate for a SBS context.

 

Noting that there is a relatively small evidence base on the efficacy of the Common Rule and IRBs, Jeffrey Rodamar, Department of Education, reviewed some of the existing data. He found that despite popular perception, IRBs function pretty well. They are generally no more of an administrative burden than other grant-related activities; on average, review takes less than three percent of a study's time; a majority of studies are approved; expedited review takes less than a month on average and full review takes less than two months; and extreme delays are statistically uncommon. Rodamar described data showing that both SBS and biomedical researchers generally approve of the IRB system. He conceded that there are some problems with the Common Rule regulations and IRBs, but, paraphrasing Winston Churchill, suggested that perhaps "IRBs are worst form of governing research except for all those other forms that have been tried from time to time."

 

The "Minimal Risk" Standard

 

The second session, moderated by Celia Fischer, Fordham University, focused on the types of "risks and harms" encountered in SBS research. Richard T. Campbell delved into the concept of "minimal risk," an important area for researchers dealing with human subjects. The determination of whether participation in a study represents a "minimal risk" dictates the level of IRB review that takes place. Under the Common Rule, a study represents minimal risk if "the probability and magnitude of harm or discomfort anticipated in the research are not greater in and of themselves than those ordinarily encountered in daily life or during the performance of routine physical or psychological examinations or tests." Noting that it is a "cognitively complex" concept, Campbell suggested that risk can be thought of as the relationship between the probability of harm occurring and the severity of potential harm. Thus, the Common Rule provides some flexibility in that it does not dictate that both probability severity must be "minimal," just that, as probability increases, the severity of possible harm must decrease (and vice versa). Given that other parts of the definition are also thorny (such as what is meant by "daily life"), Campbell suggested that the Office of Human Research Protection (OHRP) could provide guidance to facilitate more consistent application of the minimal risk benchmark.

 

Brian Mustanski, Northwestern University Feinberg School of Medicine, spoke about his research on risky and sensitive behavior (such as drug use, sexual behavior, and HIV) in youth, which are topics that often make IRBs skittish. He conducted a study that was reviewed by two IRBs. One board approved it immediately, while the other delayed the study for six months because it was felt to be a "slight increase" over minimal risk. However, when Mustanski surveyed his subjects, a large majority felt that their participation was less uncomfortable than a routine medical exam (the minimal risk standard). Mustanski argued that such institutional reluctance to approve research into controversial or sensitive subjects as minimal risk can have a chilling effect, leading to a poor evidence base for interventions with already underserved populations, which is indeed the case regarding HIV prevention in LGBT youth.

 

Steve Breckler, American Psychological Association and COSSA Board Member, discussed the concept of risk in the SBS context. He reminded the audience that the broad goal of assessing risk is to calibrate the level of review to the level of risk a study poses to participants, in other words, to protect subjects and reduce unnecessary regulatory burden. He argued that the social science community should put greater focus on producing evidence to determine how well regulations are working and that having better guidance and tools for assessing risk would facilitate the work of IRBs.

 

Charles Plott, California Institute of Technology and a former COSSA Board member, posed the question of whether the entirety of the research endeavors for some fields, like economics, political science, game theory and decision science, could be said to be wholly without risk. In a survey of economics, political science, and judgment and decision making associations, Plott found very low numbers of adverse incidents and reports of harm, all of which were low-magnitude events (such as feelings of stress or frustration). He argued that some research topics-- markets, committees and voting, games, processes, and decisions-- and some research methods-- questionnaires, computer games, etc.-- can be said to pose no potential harm to subjects and should thus be exempted from consideration under the Common Rule.

 

Informed Consent and Special Populations

 

A session on the consent process and special populations was moderated by Margaret Foster Riley, University of Virginia. Sally Powers, University of Massachusetts, Amherst, discussed how consent operates in her research on depression, which collects "rich" behavioral and biospecimen data (which can be recoded and analyzed as part of future analysis). The proposed changes to the Common Rule would require that prior consent is obtained for re-analysis of biospecimens, but that consent should be given for open-ended use of specimens. However, the changes do not address rich behavioral data; Powers argued that the same standards should be applied.

 

Roxane Cohen Silver explained how she conducts research on victims of disasters and traumatic experiences (like natural disasters, infant death, and mass shootings) shortly after such events occur. Silver argued that such research can be conducted ethically and sensitively, if participants are given multiple opportunities to opt out, are allowed to refuse to answer questions and researchers and staff are well-trained. Noting that this type of research is most valuable if it is commenced immediately after a traumatic event, Silver described her arrangement with her IRB, which pre-approved a generic post-disaster proposal. In the aftermath of a traumatic event, Silver provides the IRB with specific information and can get full approval within 48 hours.

 

Celia Fischer, Fordham University, spoke about some of the issues involving obtaining informed consent from children. She argued that simplifying consent forms, as proposed by the ANPRM, would be useful. However, relying on standardized forms can be problematic for certain types of research and subjects of different ages, language skills, and educational backgrounds. Fischer observed that verbal consent can be a better form in certain contexts. She also noted that emancipated minors are often not treated as full adults by IRBs, despite being adults under the law. Fischer pointed out the issue of re-obtaining consent from adults, for whom parental consent had been granted when they were minors.

 

Data Security and Sharing

 

David Weir, University of Michigan Survey Research Center, moderated a panel on "Data Use and Sharing and Technological Advancement." The proposals in the ANPRM would mandate that all studies that collect identifiable or potentially identifiable data to have data security plans. George Alter, University of Michigan Interuniversity Consortium for Political and Social Research (ICPSR), which archives and protects social science data, spoke about some of the ways data can be kept secure. Informational risk can be reduced by improving study design (implementing certain sampling procedures, using multiple sites), having protection plans in place, using data repositories and archives, and training. ICPSR restricts data based on the degree of risk of disclosure and severity of harm from that disclosure, from publically releasing data online to requiring researchers work with data in physical data enclaves.

 

Taylor Martin, University of Utah, spoke about the data security implications of her research into math learning, which collects rich data from children playing online educational games. This type of research shows promise in terms of providing new information about how different kinds of children learn and how we can teach them better. However, concerns about data security can have a chilling effect on data sharing and reuse among researchers. Martin observed that for-profit companies are collecting data and doing the same kind of research without having to go through the same hurdles as researchers.

 

Susan Bouregy, Yale University Human Research Protection Program, raised concerns about the ANPRM's proposal to apply HIPAA standards for deidentification of data (requiring removal of 18 specific identifiers). Bouregy noted such standards may make some data sets unusable while ignoring other ways individuals could be identified. She also argued that some of the mandated HIPAA security elements are not appropriate for certain types of social science research. Furthermore, it ignored that not all identified data is risky. Finally, Boregy suggested that the ANPRM's requirement that all suspected data breaches be reported should be made more flexible and allow IRBs to tailor reporting to the context of each situation.

 

Multi-Disciplinary and Multi-Site Studies

 

Robert Levine, Yale, University, moderated a session focused on multi-disciplinary and multi-site studies. Pearl O'Rourke, Partners Health Care System, discussed the requirement that multi-site studies use a single IRB of record. She noted that having a central IRB does not absolve the individual institutions of fulfilling a number of responsibilities in overseeing and approving research. O'Rourke was concerned that mandating a central IRB would not address the complexity of each situation. Furthermore, the requirement underestimates the costs and time involved in running a central IRB.

 

Laura Stark, Vanderbilt University Center for Medicine Health and Society, gave an ethnographic perspective on IRB decision-making. As an explanation for why IRBs reach different conclusions regarding the risk level of similar research, Stark suggested the concept of "local precedents," or allowing past decisions to govern the evaluation of subsequent research. Such precedents may lead to faster decisions and internal consistency, but they can be problematic for researchers working with multiple IRBs. Stark offered three strategies to work around local precedents: 1) study networks (having a central IRB for multiple sites), 2) collegial review (allowing departmental experts to review research), and 3) decision repositories (online archives of approved protocols from many IRBs).

 

Thomas Coates, University of California, Los Angeles Program in Global Health, shared his experience with multinational studies (which are not addressed by the ANPRM). Some concerns he encountered included whether requiring other countries to adhere to U.S. requirements could be considered paternalistic, how to evaluate minimum risk in different cultural and economic contexts, and how to harmonize U.S., international, and local regulations. Coates also stressed the importance of receiving approval from local bodies in addition to U.S.-based IRBs.

 

The Scope of Institutional Review Boards

 

A final session, moderated by Yonette Thomas, Howard University and a COSSA board member, focused on the "Purview and Roles of IRBs." Lois Brako, University of Michigan, discussed the ANPRM's proposed changes from the perspective of an IRB that has made strides to become more innovative and flexible. Brako praised the ANPRM's proposals to reduce the oversight burden for minimal risk studies, eliminate annual review, and harmonize federal regulations (so long as the harmonization does not take the form of a unilateral one-size-fits-all approach). However, she argued that some of the proposals are unnecessarily burdensome, including requiring all institutions that receive Common Rule funding to be subject to federal oversight, some of the information security provisions, requiring reports of all adverse events to be submitted and stored in a central database, and expanding "human subjects" to include deidentified biospeicimens. Brako also suggested that in some cases, clearer guidance from OHRP would be more helpful than changed regulations.

 

Rena Lederman, Princeton University, observed that the Common Rule regulations were written from a biomedical perspective and are particularly unsuited for certain types of SBS research, such as anthropological fieldwork. Anthropologists establish thick relationships with their subjects, immerse themselves in other cultures, and do not test hypotheses or run controlled experiments. The ANPRM's requirements for informational security could cripple anthropological research (anthropologists' detailed fields notes would treated as data with informational risks under the new rules, raising the question of how such notes could be deidentified). Rather than trying to adapt the Common Rule to fit SBS research, Lederman proposed that it be only applied to biomedical research. She proposed the creation of a National Commission to develop an alternative guidance and framework to address SBS research risks.

 

Cheryl Crawford Watson, National Institute of Justice (NIJ), discussed the Department of Justice's (DOJ) approach to confidentiality and how it differs from other regulations regarding human subjects protection. Researchers funded by DOJ must submit a Privacy Certificate, which protects researchers and data from subpoena. It also prevents the researcher from violating subjects' privacy for any reason other than future criminal conduct. The DOJ privacy certificate differs from the certificate of confidentiality mandated by other agencies (like Health and Human Services) in that it prohibits researchers from reporting child abuse, reportable communicable diseases, and threatened harm to self or others. In order to be allowed to report such abuse, researchers must get the subjects to sign a separate consent-to-report form. The certificate is so strict due to concerns that few of the subjects under DOJ's purview would consent to participate in research otherwise.



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