Getting it Right on Rare Diseases: The National Network of Libraries of Medicine’s First #citeNLM2018 Edit-a-thon on April 17

It seems like a natural collaboration:

The world’s largest medical library and the world’s largest encyclopedia.

On April 17, medical librarians and others will participate in a Wikipedia edit-a-thon to make it easier to get credible, evidence-based information on rare diseases.

“Wikipedia is one of the most popular websites in the world. People visit to find health information,” said Amanda J. Wilson, head of NLM’s National Network Coordinating Office. Wilson’s office leads NLM’s National Network of Libraries of Medicine, a network of health science libraries and information centers across the nation.

Rosie the Riveter holds a stethoscope and proclaims, "We Can Edit!"Why rare diseases?

“We wanted to help where the need was greatest,” said Franda Liu, project scientist at NNLM who is leading a group of regional staff organizing and promoting the event.

Volunteer Wikipedia editor James Heilman, MD, explained, “Often people struggle to find information on rare diseases. This will help many people with these conditions.”

Wikipedia pages on well-known health conditions tend to have the most reliable information. “If you’re looking at malaria, HIV/AIDS, or autism, for example, those are well-developed pages,” said Heilman. “Rare diseases are among the medical pages that need the most attention, and even though these diseases are rare, we still have substantial traffic going to these conditions.”

In the United States, a rare disease is one that affects fewer than 200,000 people. There are nearly 7,000 rare diseases. More than 25 million Americans have one.

NLM has resources to help.

“We’ll cite trusted information from NLM tools like Genetics Home Reference and MedlinePlus, and GARD, NIH’s Genetic and Rare Diseases Information Center,” said Liu. “We’ll expand to more health topics later.”

Why NLM?

“The Library’s an amazing place,” said Heilman who took a tour of NLM a few years ago. “The United States has taken an incredible position with respect to copyright in that everything produced by the federal government is released in the public domain. This means that materials by the National Institutes of Health and the Centers for Disease Control and Prevention are fully reusable.”

The Network’s members are in an ideal position to help based on their expertise and experience, especially when it comes to referencing material.

“Referencing is key when you come to Wikipedia,” said Heilman. “If you add your opinion or something you think to be true, it will rapidly be removed. You need high-quality sources.”

Getting the word out

After the pages are updated on April 17, millions of people with access to the internet will have access to more information on rare diseases and will know about NLM and NIH resources.

But what about people without the internet?

“More than half of the world’s population—nearly four billion people—does not have any access or easy access to the internet,” said Heilman.

Wikipedia has been working on solutions.

“We’ve developed offline apps, so when people do have internet access, they can download all of Wikipedia’s medical content to a phone or card, so even if internet access were to disappear, they’d still have access,” he explained.

Heilman sees other applications for the offline apps. “This is something that’s useful in disaster situations because, even if communication breaks down, people still need access to information,” he said. “We’re seeing usage in war zones like Syria.”

The online encyclopedia has also collaborated on an “Internet-in-a-Box.”

“This miniature computer sends out a Wi-Fi signal that allows people to access the content on the device,” explains Heilman. “They’re used in refugee camps and small health clinics in the developing world, so that staff has access to this health content. We’re currently shipping these Internets-in-a Box all around the world.”

Reaching goals

Updating and adding credible, evidence-based information on rare diseases to Wikipedia is just one way that NLM is actively engaged in reaching a major strategic goal to “reach more people in more ways through enhanced dissemination and engagement pathways.”

Join NNLM for the #citeNLM2018 Edit-a-thon on April 17, 2018!

3 thoughts on “Getting it Right on Rare Diseases: The National Network of Libraries of Medicine’s First #citeNLM2018 Edit-a-thon on April 17

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