User:Hindustanilanguage/NIH and WMF Collaboration
Hi, Here is our response to your questionnaire. As you will note, you have all the information you need here. Thanks for your interest in NIH.
Questionnaire regarding NIH and Wikimedia Foundation Collaboration to Improve Online Health Information
1.How was the idea of NIH and Wikimedia Foundation Collaboration to Improve Online Health Information conceived?
The collaboration dates back to October 2008 with an initial conversation between the NIH Office of Communications and Public Liaison and Wikipedia Foundation leadership. The Wikipedia Foundation is the nonprofit organization that runs the online encyclopedia. Discussions focused on a possible collaboration designed to “improve upon the quality of health, medical, and scientific information provided through Wikipedia.”
2.How many special events have been organized such as Bethesda campus event in Maryland, USA on July 16 2009 hosted by NIH for familiarization with the mechanics of editing Wikipedia?
On July 16, 2009, NIH and the Wikipedia Foundation sponsored a Wikipedia Academy on campus, the first ever held in the U.S. The event also represented the first time the Wikimedia Foundation collaborated with a federal agency. There have been no subsequent events because no need for such an event has been identified.
3. Tell us about the follow-up contributions made to Wikipedia?
NIH developed a policy and email address for use by agency staff members and contractors who wish to write and edit for Wikipedia. More information on this can be found under the resources listed in the last question of this questionnaire.
4. Can you share the Wikipedia article growth/expansion/improvement statistics as a result of this effort?
Maintaining metrics and statistical data for external entities, even when those entities are agency partners, remains outside of the biomedical research mission of the National Institutes of Health. More about the NIH mission can be found at http://www.nih.gov/about/mission.htm.
We believe that one of the agency’s major strengths is freedom of scientific exchange. NIH subject matter experts are able to contribute to Wikipedia freely, voluntarily, and without agency intrusion. Any scrutiny of content provided Wikipedia by NIH subject matter experts is provided through the encyclopaedia’s own “structures and community policies.” Wikipedia may be able to provide further guidance on its community procedures and methods.
5. How many people got involved with the project?
Academy attendees including approximately one dozen foundation staff members and volunteers, scientists, science educators, and writers, as well as communication professionals equipped with laptops to learn how to become contributors to “the world’s largest encyclopaedia.” About 100 participants total broke into small work groups for hands-on orientation to writing and editing mechanics. More information about this is available in the resources listed under the last question of this questionnaire.
6. Can give a brief account of the people (background as well as designation(s)) involved with the project?
Wikipedia Foundation participants included Foundation officers, volunteers, and facilitators, including six editors and core project team members. NIH participants were drawn from across the agency’s 27 Institutes and Centers. Most were scientists and Federal communicators (e.g., public affairs personnel, technical writers, health educators, and analysts). More information about this is available in the resources listed under the last question of this questionnaire.
7. What was the implementation plan (phases/ rounds, etc)?
The immediate implementation need was development of a policy. That policy was finalized and made available online in March 2010. At this time, no follow-up activity is planned.
8. How would you rate the Online Health Information on English Wikipedia now?
Reviewing external websites remains outside of the biomedical research mission of the National Institutes of Health. The NIH cannot endorse public information developed and disseminated by external entities. In addition, the agency does not offer personalized medical advice about conditions or treatment approaches. Any health, scientific, and medical information provided on the NIH web site, contractor sites, and partner sites should not be used as a substitute for professional medical care. We urge individuals to work with health professions for answers to personal health questions.
More about the NIH mission can be found at http://www.nih.gov/about/mission.htm.
9. Apart from English, was there an attempt to target other language Wikipedia(s) such as Spanish / French?
In 2009, the NIH invited participants to an event sponsored to “educate [participants] about Wikipedia's current practices and policies, and to teach the basics . . . of wiki editing in specialized workshops.”
10. Does the plan also aim to target other Wikimedia projects such as Wikisource/Wikibooks? What has been your focus on specific areas such as HIV / AIDS awareness?
The purpose of the 2009 event was to develop a "WikiProject NIH." The event was sponsored to “educate [participants] about Wikipedia's current practices and policies, and to teach the basics . . . of wiki editing in specialized workshops.”
The NIH does not direct or assign NIH subject matter experts to work on a particular health condition, disease, or area of research. Volunteer writers and editors contribute to Wikipedia freely, voluntarily, and without agency intrusion.
More about the NIH’s work in the area of HIV/AIDS can be found at http://www.oar.nih.gov/.
11. Has the project resulted in the development of adequate content for rare diseases such as Beriberi and Neuronal ceroid lipofuscinoses (NCLS)?
The NIH does not direct or assign NIH subject matter experts to work on a particular health condition, disease, or area of research. Volunteer writers and editors contribute to Wikipedia freely, voluntarily, and without agency intrusion.
More information about the NIH’s work in the area of NCL can be found at http://www.ninds.nih.gov/disorders/batten/detail_batten.htm.
12. Has the project remained focused to health or has it been sufficiently extended to include elements of pharmacology and other related fields?
The NIH does not direct or assign NIH subject matter experts to work on a particular health condition, disease, or area of research. Volunteer writers and editors contribute to Wikipedia freely, voluntarily, and without agency intrusion.
13. What specific guidelines would you like to give to other organizations who might be thinking of collaborating with Wikimedia Foundation?
Articles in Wikipedia are collaboratively written and have been released by their authors under an open source license. Organizations should be aware of what this means: articles are free content and may be reproduced freely by anyone, without permission, under the same license.
In addition, there is no guarantee of accuracy or lack of bias solely because an individual has been trained by an organization to write and edit. In addition, content may continue to be subject—or vulnerable—to changes and further edits, even by persons who may post inaccurate, dissenting, biased, or questionable content. An Academy-type collaboration with the Foundation cannot prevent, guarantee, or resolve this conundrum. Wikipedia may be able to provide further guidance on its community procedures and methods.
14. Can you share some of the scanned copies of the press coverage of events as well as important / relevant website links?
Media coverage is limited because this was a working event, not an event targeting widespread press attendance or coverage.
A Wired piece is online at: http://www.wired.com/2009/07/wikipedia-training-scientists-on-wiki-culture/
A lay overview of the event is online at: http://nihrecord.nih.gov/newsletters/2009/09_04_2009/story2.htm
A Federal News Radio interview with NIH communications head John Burklow is accessible at http://media.bonnint.net/wtop/15/1587/158757.mp3.
NIH policy concerning Wikipedia editing is online at http://www.nih.gov/icd/od/ocpl/resources/wikipedia/index.htm, and NIH established an email address for use by Wikipedia writers and editors: NIHWikipediaComments@mail.nih.gov.
A relevant Wikipedia site devoted to the Academy can be found at http://en.wikipedia.org/wiki/Wikipedia:Academy/NIH_2009.
A related Wall Street Journal article, Volunteers Log Off as Wikipedia Ages, is online at http://on.wsj.com/1e8tIcj
- # #