Because good research needs good data


Meet the IDCC 2019 Speakers

Christine Kenneally

Christine Kenneally is an award-winning journalist and author who has written for The New Yorker, The New York Times, Slate, Time, New Scientist, Scientific American, The Monthly, and other publications. Her books, The Invisible History of the Human Race: How DNA and History Shape Our Identities and Our Futures and The First Word: The Search for the Origins of Language, are published by Viking Penguin. Before becoming a reporter, she received a Ph.D. in linguistics from Cambridge University and a B.A. (Hons) in English and Linguistics from Melbourne University. She was born and raised in Melbourne, Australia, and has lived in England, Iowa, and Brooklyn, New York (ckenneally at ckenneally dot com). For the last four years she has been a senior contributor at Buzzfeed News, working on an American orphanage story.

Data, the creation of history and its impact on real lives

In the 21st century most people think of personal data as fitness tracking from their Fitbit or the trail of where they have been on the web, and there is great concern about their information privacy. Yet many people who grew up in orphanages and institutions of the 20th century — and who are alive today — experienced a loss of personal information that few people outside those institutions could imagine. The children of 20th century orphanages often had no idea when their birthdays were, because they were never told and birthdays were rarely celebrated. Often institutionalized children did not know the names of their parents or siblings, or even that they had siblings at all, even when their siblings lived at the same institution. At its most stark, the stripping away of personal data included the fact that in many catholic institutions in Australia and the United States, children were assigned a number when they first entered the institution, and they were thereafter addressed by number rather than name. In one case, a child didn’t hear another person say their name aloud until after the age of ten. Many had no idea who they were, where they had come from, or who their people were. Crucially, they also didn’t know that other people knew such things about themselves, so although they grew up in a world that had most of their personal information stripped out of it, they were not aware of its absence.

They felt the effects of that void, nevertheless. The disappearing of personal history and other information, frequently coupled with the impact of terrible abuse, created a population of adults, in which many struggle with the effect of addiction, a fear of institutions, and other challenges, at the same time that they try to recoup their personal information.

A case study comparison between the world of child institutions of 20th century Australia and the United States illuminates the potentially enormous impact of responsible data curation. In Australia, a highly energized activist group, multiple government inquiries, and deeply engaged members of the archivist community mean that the history of “care leavers” is relatively familiar to the community at large. This state is especially characterized by a completely novel information provider, evidence-base, and story repository known as Find & Connect. By contrast, in the United States, the history of orphanages is almost entirely invisible. Even as the residents of orphanages were anonymized and disappeared by their institutions, the institutions themselves have now almost entirely vanished. Most Americans believe that orphanages belong to a bygone era, and that they closed the 19th century, but there were 100s still active in the 1960s. Even as the trauma of the institutions still impacts former residents and their families, the record is almost lost.

I will present a case study of information security and information entropy in the history of childcare institutions in Australia and the United States, focusing on the key points of difference, which include the role of data curators and powerful individuals, government inquiries, journalism, and transitional justice, with a view to illuminating the critical role that data curators have to play, not just in the creation of history, but in its impact on individual lives.

Read an interview with Christine Kenneally about her keynote

Dr Patricia Brennan

Patricia Flatley Brennan, RN, PhD, is the Director of the National Library of Medicine (NLM), a component of the National Institutes of Health (NIH). The NLM is the world’s largest biomedical library and the producer of digital information services used by scientists, health professionals and members of the public worldwide.

Since assuming the directorship in August 2016, Dr. Brennan has positioned the Library to be the hub of data science at NIH and a national and international leader in the field. She spearheaded the development of a new strategic plan that envisions NLM a platform for biomedical discovery and data-powered health.  Leveraging NLM’s heavily used data and information resources, intramural research, and extramural research and training programs, Brennan aims for NLM to accelerate data driven discovery and health, engage with new users in new ways, and develop the workforce for a data-driven future.

Dr. Brennan came to NIH from the University of Wisconsin-Madison, where she was the Lillian L. Moehlman Bascom Professor at the School of Nursing and College of Engineering. She also led the Living Environments Laboratory at the Wisconsin Institutes for Discovery, which develops new ways for effective visualization of high dimensional data.

A past president of the American Medical Informatics Association, Dr. Brennan was elected to the Institute of Medicine of the National Academy of Sciences (now the National Academy of Medicine) in 2001. She is a fellow of the American Academy of Nursing, the American College of Medical Informatics, and the New York Academy of Medicine.

Jumping into the stream of data curation

Realizing the promise of data-driven discovery requires engagement with advanced data management strategies from the inception of a research idea through responsible reporting of results into a future of perpetual access and reuse of the data.  As the largest collection of biomedical research and data in the world, the US National Library of Medicine (NLM) plays key roles in support of data-driven discovery, including serving as custodian of key data assets (e.g. dbGaP,, core contributor to the National Institutes of Health Strategic Plan for Data Science, and promotor of health data standards.  In addition, the NLM supports research designed to accelerate data curation, including computational approaches to curation at scale, strategies to de-bias existing data assets, and development of tools that bring the value of data-driven discovery into the hands of patients. The NLM’s own long range plan envisions a future where new work processes must be devised to leverage up-stream investment in curation at the point of data generation and down-stream strategies to locate, re-use, and enrich data resources. 

Read an interview with Patti Brennan about her keynote

Nancy McGovern and Clifford Lynch

Nancy and Cliff will hold a community discussion entitled "Digital Practice and Collaboration: A Community Dialogue about Opportunities and Struggles." The plenary will build on a discussion between Nancy and Cliff following her closing keynote at IDCC18 which made an impassioned call for collaboration across communities and inclusivity. It is an opportunity to a explore the issues, elaborating on key challenges we face in the digital age and methods to overcome these. Questions will be invited in advance to shape discussion.

Nancy Y. McGovern is the Director of Digital Preservation at MIT Libraries. Her research and community interests include increasing organizational capacity to develop and sustain digital preservation programs; working to build a diverse and inclusive digital community; and the means for organizations and communities to continually respond to the opportunities and challenges of ongoing technological change. She has more than thirty years of experience with preserving digital content, including senior positions at ICPSR; Cornell University Library; the Open Society Archives; and the Center for Electronic Records of the U.S. National Archives.

Cliff Lynch portrait

Clifford Lynch has led the Coalition for Networked Information (CNI) since 1997.  CNI, jointly sponsored by the Association of Research Libraries and EDUCAUSE, includes about 200 member organizations concerned with the intelligent uses of information technology and networked information to enhance scholarship and intellectual life.

CNIʼs wide-ranging agenda includes work in digital preservation, data intensive scholarship, teaching, learning and technology, and infrastructure and standards development. Prior to joining CNI, Lynch spent 18 years at the University of California Office of the President, the last 10 as Director of Library Automation. Lynch, who holds a PhD in Computer Science from the University of California, Berkeley, is an adjunct professor at Berkeleyʼs School of Information. 

He is both a past president and recipient of the Award of Merit of the American Society for Information Science, and a fellow of the American Association for the Advancement of Science, the Association for Computing Machinery, and the National Information Standards Organization. He served as co-chair of the National Academies Board on Research Data and Information from 2011-2016; he is active on numerous advisory boards and visiting committees.  His work has been recognized by the American Library Associationʼs Lippincott Award, the EDUCAUSE Leadership Award in Public Policy and Practice, and the American Society for Engineering Educationʼs Homer Bernhardt Award.

Contribute questions for the community discussion

Read interview with Nancy and Cliff