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WHO Goodwill Ambassador's Newsletter For The Elimination Of Leprosy

SPOTLIGHT: Fighting Leprosy with Knowledge

Infolep is the place to go for information on leprosy and related subjects.

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NLR’s information officer Jiske Erlings

Established more than four decades ago by Netherlands Leprosy Relief (NLR), Infolep has become one of the go-to resources for anyone involved in leprosy, from researchers and students to program managers and field workers. Starting out as a library collection in Amsterdam and a literature research and document delivery service, Infolep has grown to include an impressive online portal of all things leprosy.*

Between the library and the portal, users have easy access to more than 23,500 articles, books, WHO reports, training materials and “gray literature” (unpublished documents) — and the list is growing all the time. Over 1,700 can be viewed online in full for free.

For the past 10 years, Infolep has been overseen by Jiske Erlings, NLR’s information officer. Trained as a librarian, Jiske’s initial job with NLR was to look after the library collection, fulfill requests for literature research and mail new articles to subscribers. She was also responsible for maintaining and expanding the Infolep website.

“We used to send out packets of new literature all over the world, which was expensive and time consuming, and the packets didn’t always arrive,” she recalls. “Increasingly, however, we have been able to send out material by email or put it on the website, so that people can just take what they need.”**

GROWING IN SCOPE

In 2012, the International Federation of Anti-Leprosy Associations (ILEP) was invited to participate in and sponsor the project. The support of ILEP and sponsorship provided by NLR’s fellow ILEP members has enabled the upgrade of the Infolep website and the purchase of new publications.

“The situation is changing very fast,” says Jiske. “Most publications these days are now online. On the other hand, a lot of them are copyright protected and still difficult for people in the field to access. In addition, it is difficult to obtain everything since probably more than 600 articles are published each year.”

Much of Infolep’s collection is in English, so there is further work to be done to broaden its language base. “I’m trying to include more publications in other languages and to expand the collection through cooperation with other organizations,” she says. Another ongoing task is to make links between publications that are interrelated and to draw up a list of key themes that are of particular importance to those working in leprosy, such as stigma and social participation.

“I’m trying to include more publications in other languages and to expand the collection.”

‘KNOWLEDGE CENTER’

As part of its role as an “international knowledge center” for information sources on leprosy, Infolep offers a quick reference service. Questions the information officer has been asked include: “Do you have literature on the link between stigma and Catholicism?”; “Can you find a quote by a famous person on leprosy?”; “Do you have information about self-care in Ethiopia?”; and “Where can I find the latest leprosy statistics?”

Although its online offering is impressive, there are some queries Infolep can’t yet satisfy — such as requests to download the well-known textbook Leprosy edited by Robert C. Hastings or other works that are not yet digitized. “I don’t know if dealing with the author copyright and digitizing these books is a task for us, but it would be good to include such works on the website if possible,” Jiske says. Another addition, in due course, will be training videos and other training materials.

As Infolep grows in size and scope, Jiske is clearer than ever about its mission. “I want people to use the website not only to search for documents but also to share publications in order to help fight the disease,” she says. “Especially now there are fewer cases of leprosy, it is important to make knowledge more widely and easily available.”

FOOTNOTES

* http://www.leprosy-information.org/

** In the first six months of 2013, portal visits were led by those from India, the United States and the Netherlands. The total number of unique visits was 14,328.