Featured Research

from universities, journals, and other organizations

New report on creating clinical public use microdata files

Date:
September 15, 2011
Source:
Children's Hospital of Eastern Ontario Research Institute
Summary:
Many governments in Europe and the US are looking at ways to make more data publicly available. Federally, there is also an open government initiative in Canada. Privacy concerns may be leading to some hesitation in pushing forward with such efforts -- but as demonstrated in this study, privacy concerns can be addressed in a defensible manner.

The demand for transparency through publicly available healthcare data is on the rise. This is the case for administrative and clinical data for research, and for clinical trials data used to support new drug approvals. Broad data access has a measurable impact on research and policy making. A new report by Dr. Khaled El Emam, the Canada Research Chair in Electronic Health Information at the University of Ottawa and the Children's Hospital of Eastern Ontario Research Institute, looks at the creation of clinical public use microdata files (PUMFs).

"We have shown how to create useful clinical public data files while providing strong protections for the privacy of individuals," explained Dr. El Emam. "The U.S. and the U.K., as well as other countries are steering an international debate right now about open data, and are leading the way in providing access to detailed health information. But there are very few organizations in Canada, all sitting on gold mines of data, which have made that data publicly available. More Canadian agencies need to step up!" The report demonstrates that making the data anonymous is possible and doing so does not put patient privacy at risk.

A PUMF can serve multiple purposes, including: confirming published results, providing broader feedback to improve data quality, use it for training students and fellows in data analysis, providing an easily accessible data set for researchers to design studies, examine the feasibility of certain studies, and prepare for analyses on more detailed data that are not publicly available, and be used as a large data set for computer scientists and statisticians to evaluate analysis and data mining techniques.

The report, available in the BMC Medical Informatics and Decision Making Journal, looked at a random sample of individual-level data files; part of the discharge abstract database from the Canadian Institute for Health Information (CIHI). Two different PUMFs were produced; one with geographic information and another without geographic information but containing more clinical information. The findings were clear -- the PUMFs ensured that the risk of re-identifying individual patients was very low and after the changes made to the data to protect patient identity the data was still useful for analysis.

To create the PUMF, the paper describes new metrics for measuring re-identification risks; develops a new efficient algorithm for minimizing the amount of information that needs to be removed from the data; explores the different plausible ways that Canadians' health data can be attacked; and demonstrates tactics that can be used to maximize the value of the data that is released. The report provides an example of the steps that need to be followed to create a PUMF.

"Canada has a single payer system, which means that population-level data sets already exist. Currently gaining access to such data is often limited to certain groups, is complex and time-consuming," said Dr. El Emam. "Making data public is not difficult to do; data quality can be maintained; and the economic and health system benefits are substantial! Worries about privacy are simply not a convincing excuse anymore as it's largely a solvable problem."


Story Source:

The above story is based on materials provided by Children's Hospital of Eastern Ontario Research Institute. Note: Materials may be edited for content and length.


Journal Reference:

  1. Khaled El Emam, David Paton, Fida Dankar, Gunes Koru. De-identifying a Public Use Microdata File from the Canadian National Discharge Abstract Database. BMC Medical Informatics and Decision Making, 2011; 11 (1): 53 DOI: 10.1186/1472-6947-11-53

Cite This Page:

Children's Hospital of Eastern Ontario Research Institute. "New report on creating clinical public use microdata files." ScienceDaily. ScienceDaily, 15 September 2011. <www.sciencedaily.com/releases/2011/09/110915113754.htm>.
Children's Hospital of Eastern Ontario Research Institute. (2011, September 15). New report on creating clinical public use microdata files. ScienceDaily. Retrieved April 20, 2014 from www.sciencedaily.com/releases/2011/09/110915113754.htm
Children's Hospital of Eastern Ontario Research Institute. "New report on creating clinical public use microdata files." ScienceDaily. www.sciencedaily.com/releases/2011/09/110915113754.htm (accessed April 20, 2014).

Share This



More Computers & Math News

Sunday, April 20, 2014

Featured Research

from universities, journals, and other organizations


Featured Videos

from AP, Reuters, AFP, and other news services

Nintendo Changed Gaming World, but Its Future Uncertain: Upstone

Nintendo Changed Gaming World, but Its Future Uncertain: Upstone

AFP (Apr. 19, 2014) The Nintendo Game Boy celebrates its 25th anniversary Monday and game expert Stephen Upstone says the console can be credited with creating a trend towards handheld gaming devices. Duration: 01:21 Video provided by AFP
Powered by NewsLook.com
Nearly Two Weeks On, The Internet Copes With Heartbleed

Nearly Two Weeks On, The Internet Copes With Heartbleed

Newsy (Apr. 19, 2014) The Internet is taking important steps in patching the vulnerabilities Heartbleed highlighted, but those preventive measures carry their own costs. Video provided by Newsy
Powered by NewsLook.com
Facebook To Share Nearby Friends Data With Advertisers

Facebook To Share Nearby Friends Data With Advertisers

Newsy (Apr. 19, 2014) A Facebook spokesperson has confirmed the company will use GPS data from the new Nearby Friends feature for advertising sometime in the future. Video provided by Newsy
Powered by NewsLook.com
Man Claims He Found Loch Ness Monster With... Apple Maps?

Man Claims He Found Loch Ness Monster With... Apple Maps?

Newsy (Apr. 18, 2014) Andy Dixon showed the Daily Mail a screenshot of what he believes to be the mythical beast swimming just below the lake's surface. Video provided by Newsy
Powered by NewsLook.com

Search ScienceDaily

Number of stories in archives: 140,361

Find with keyword(s):
Enter a keyword or phrase to search ScienceDaily for related topics and research stories.

Save/Print:
Share:

Breaking News:
from the past week

In Other News

... from NewsDaily.com

Science News

Health News

Environment News

Technology News



Save/Print:
Share:

Free Subscriptions


Get the latest science news with ScienceDaily's free email newsletters, updated daily and weekly. Or view hourly updated newsfeeds in your RSS reader:

Get Social & Mobile


Keep up to date with the latest news from ScienceDaily via social networks and mobile apps:

Have Feedback?


Tell us what you think of ScienceDaily -- we welcome both positive and negative comments. Have any problems using the site? Questions?
Mobile: iPhone Android Web
Follow: Facebook Twitter Google+
Subscribe: RSS Feeds Email Newsletters
Latest Headlines Health & Medicine Mind & Brain Space & Time Matter & Energy Computers & Math Plants & Animals Earth & Climate Fossils & Ruins