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An overview of state and federal regulatory schemes that affect digital health - beyond HIPAA - together with a discussion of the opportunites presented and strategies for dealing with the regulatory environment
As a librarian, Regina Roberts' work centers on facilitating the research process by collecting, organizing, preserving and providing access to information resources. Roberts is deeply interested and engaged in finding ways to utilize institutional repositories for preserving and archiving news and the data supporting the production of news stories.
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The Pew Research Center’s Internet & American Life Project and Elon University’s Imagining the Internet Center asked digital stakeholders to weigh two scenarios for 2020, select the one most likely to evolve, and elaborate on the choice. One sketched out a relatively positive future where Big Data are drawn together in ways that will improve social, political, and economic intelligence. The other expressed the view that Big Data could cause more problems than it solves between now and 2020
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The Big Data Industry1 2
Big Data receives a lot of press and attention—and rightly so. Big Data, the combination of
greater size and complexity of data with advanced analytics,3 has been effective in improving
national security, making marketing more effective, reducing credit risk, improving medical
research and facilitating urban planning. In leveraging easily observable characteristics and
events, Big Data combines information from diverse sources in new ways to create knowledge,
make better predictions or tailor services. Governments serve their citizens better, hospitals
are safer, firms extend credit to those previously excluded from the market, law enforcers catch
more criminals and nations are safer.
Yet Big Data (also known in academic circles as “data analytics”) has also been criticized as a
breach of privacy, as potentially discriminatory, as distorting the power relationship and as just
“creepy.”4 In generating large, complex data sets and using new predictions and generalizations,
firms making use of Big Data have targeted individuals for products they did not know they
needed, ignored citizens when repairing streets, informed friends and family that someone
is pregnant or engaged, and charged consumers more based on their computer type. Table 1
summarizes examples of the beneficial and questionable uses of Big Data and illustrates the
1 Dorothy Leidner is the accepting senior editor for this article.
2 This work has been funded by National Science Foundation Grant #1311823 supporting a three-year study of privacy online. I
wish to thank the participants at the American Statistical Association annual meeting (2014), American Association of Public Opin-
ion Researchers (2014) and the Philosophy of Management conference (2014), as well as Mary Culnan, Chris Hoofnagle and Katie
Shilton for their thoughtful comments on an earlier version of this article.
3 Both the size of the data set, due to the volume, variety and velocity of the data, as well as the advanced analytics, combine to
create Big Data. Key to definitions of Big Data are that the amount of data and the software used to analyze it have changed and
combine to support new insights and new uses. See also Ohm, P. “Fourth Amendment in a World without Privacy,” Mississippi.
Law Journal (81), 2011, pp. 1309-1356; Boyd, D. and Crawford, K. “Critical Questions for Big Data: Provocations for a Cultural,
Technological, and Scholarly Phenomenon,” Information, Communication & Society (15:5), 2012, pp. 662-679; Rubinstein, I. S.
“Big Data: The End of Privacy or a New Beginning?,” International Data Privacy Law (3:2), 2012, pp. 74-87; and Hartzog, W. and
Selinger, E. “Big Data in Small Hands,” Stanford Law Review Online (66), 2013, pp. 81-87.
4 Ur, B. et al. “Smart, Useful, Scary, Creepy: Perceptions of Online Behavioral Advertising,” presented at the Symposium On
Usable Privacy and Security, July 11-13, 2 ...
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firms making use of Big Data have targeted individuals for products they did not know they
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1 Dorothy Leidner is the accepting senior editor for this article.
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Intro to Big Data session, AAMC GREAT/GRAND Meeting, 2014
1. Whither “big data”?
Richard J. Bookman, Ph.D.
Miller School of Medicine
University of Miami
rbookman@miami.edu
@rbookman
AAMC 2014 GREAT/GRAND Meeting
Fort Worth, Tx
September 19, 2014
2. Big data is like teen sex.
Everybody is talking about it,
everyone thinks everyone else is doing it,
so everyone claims they are doing it.
Dan Ariely,
Center for Advanced Hindsight
Duke University
3.
4. Gartner Hype Cycle Update, August 2014
http://www.gartner.com/newsroom/id/2819918
5. The 3 V’s of Big Data
Doug Laney, Gartner, 2001;
http://www.gi.de/nc/service/informatiklexikon/detailansicht/article/big-data/druckversion.html
6. The continued expansion
of the digital universe
creates unprecedented
opportunities and pitfalls
for biomedical research.
10. "Those who ignore statistics are condemned to
reinvent it."
Brad Efron
Statistics Department
Stanford University
1997 lecture
Quoted in: DOI: 10.1111/j.1751-5823.2001.tb00474.x
11. Some Q’s to consider
• What are the big data opportunities for the
research at my institution? (EMR, ‘Omics,
games,?)
• What infrastructure do we need to do the
work?
• Who do I need on the team to take advantage
of this opportunity? What skills?
12. Building the digital research enterprise
and taking scientific advantage of
big data
is hard, slow, and expensive
and…
you probably don’t have the people you need.
Editor's Notes
70,000 pubs: ref is in Spangler et al.
NIH $’s and NIH awards are from:
http://projectreporter.nih.gov/reporter.cfm queried on 9/16/2014.
Using five FY’s (2010-FY2014, incl.) and narrowing search to ‘projects’ with key terms “p53” .AND. “kinase”.
$’s were totaled across both projects and sub-projects and divided by 5 fiscal years to get average $’s per year.
Similarly, all projects and subprojects were counted and divided by 5 to get average # awards per year.
Paper presented at:
2014 ACM conference on Data Discovery and Data Mining; Aug 24-27th, NYC.