The National Institutes of Health (NIH) today announced a new clinical research program that will aim to provide answers to patients with mysterious conditions that have long eluded diagnosis. Called the Undiagnosed Diseases Program, the trans-NIH initiative will focus on the most puzzling medical cases referred to the NIH Clinical Center in Bethesda, MD, by physicians across the nation.

The program is ready to accept patients, the first of which is expected to be seen in July 2008. To be considered for this NIH pilot program, a patient must be referred by a physician and provide all medical records and diagnostic test results requested by NIH. Patients who meet the program’s criteria — as many as 100 each year — will then be asked to undergo additional evaluation during a visit to the NIH Clinical Center that may take up to a week.

For more information about the Undiagnosed Diseases Program, go to: http://rarediseases.info.nih.gov/Undiagnosed. Physicians and patients with specific inquiries may call the NIH Clinical Center clinical information research line, at 1-866-444-8806.

At the beginning of the 2008 hurricane season and in a year with a near record number of tornadoes, this is a reminder that the American Library Association (ALA), in partnership with discount retailer Dollar General (the program funder), the American Association of School Librarians and the National Education Association, offers a grant of $5,000 to $15,000 to rebuild and expand public school library media programs affected by disasters. Beyond Words: the Dollar General School Library Relief Fund was created in 2006 to assist school libraries after a disaster.

Grants will be awarded to public school libraries that have incurred substantial damage or hardship due to a natural disaster (tornado, earthquake, hurricane, flood, avalanche, mudslide), fire or an act recognized by the federal government as terrorism. The goal is to provide funding for books, media, and/or library equipment that support learning in a school library environment.

For more information: http://www.ala.org/ala/aasl/aaslawards/dollargeneral/disasterrelief.cfm

On Monday, May 19, 2008, Google officially offered their new health service, Google Health, to the public. This service will allow users to input their health information into Google Health and link to their health records in participating pharmacies and health providers, such as Walgreens and Quest Diagnostic Labs. Once records are listed, patient health conditions will link to web pages about those conditions.

Concerns about patient privacy are being voiced by some organizations like the World Privacy Forum, since services like Google Health are not covered by the Health Insurance Portability and Accountability Act (HIPAA) which sets strict standards for security of medical records.

For more information:
New York Times: Google Offers Personal Health Records on the Web
Yahoo! News: Google Makes Health Service Publicly Available
Washington Post: Google Health: a Quick Hands-On Look

A mashup is a web application that combines data from more than one source into a new, integrated tool (adopted from Wikipedia). For instance, disease data can be mashed-up with Google Maps to create a clickable disease map giving vivid interpretation of outbreaks in different regions around the globe. Mashups have shown great potential in public health, emergency preparedness, and information sharing for local interests.

Here are some great examples:

HealthMap (http://www.healthmap.org/en) brings together disparate data sources to achieve a unified and comprehensive view of the current global state of infectious diseases and their effect on human and animal health.

School Safety News (http://www.schoolsafetynews.com/home.php) provides an alert system displaying Pre-K to College safety events from all around the US.

Earth Album (http://www.earthalbum.com/) is a mashup based on Flickr and Google Maps that allows you to explore some of the most stunning photos in the world.

CodexMap (http://codexmap.com/codexmap.php) is a tool combing a book’s ISBN number with its geographic location on Google Maps.

NN/LM Member Maps (http://nnlm.gov/scr/blog/?p=492) mashes up address data in DOCLINE with Google Maps to give you a visual display of our network members.

BioWizard (http://www.biowizard.com/) tops PubMed with Social Networking applications where you can share, rank and discuss a PubMed search result, and register for an account to list publications, share research interests and join groups. It provides a web-based community for life scientists and physicians.

And here are some Google Gadgets to play with, to add things like “My Library’s Most Popular Items” or “the Newest Material at the Library” to your iGoogle page:  http://www.blyberg.net/2006/08/18/go-go-google-gadget/

So, what can mashups do for libraries? Here are some ideas for you:

• A user does a search in your library catalog. A map then appears showing where a copy is available in the branch locations and its status.
• A scientist comes to a health librarian looking for some articles. The librarian searches PubMed and each article found is linked with related, tagged resources shared in Del.icio.us and Connotea.
• Several libraries are working collaboratively on a Virtual Reference service. A map with color-coded markers on the service home page shows users which librarian at what location is online and available at the moment. Once the user clicks on the available librarian, a chat window will be brought up for asking reference questions.

From the National Library of Medicine (NLM):

On May 7, 2008, MedlinePlus debuted a multilingual feature, providing access to high quality health information in languages other than English and Spanish. This new service benefits people who prefer to read consumer health information in their native language. It also helps the information professionals and health care providers who serve them. Over the years, many of you have requested this enhancement. Your suggestions helped us to develop this important service.

The new collection contains over 2,500 links to information in more than 40 languages and covers nearly 250 Health Topics. Continuous growth is expected.
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The most recent update to the National Institutes of Health (NIH) Public Access Frequently Asked Questions (FAQ) page was completed on May 2, 2008.

The following changes have been made:

• Questions C7, C9 and C10 are new and reflect improvements to PubMed. They clarify and simplify how awardees can comply with the fifth specification of the NIH Public Access Policy, which states: “Beginning May 25, 2008, anyone submitting an application, proposal or progress report to the NIH must include the PMC or NIH Manuscript Submission reference number when citing applicable articles that arise from their NIH funded research. This policy includes applications submitted to the NIH for the May 25, 2008 due date and subsequent due dates.”

• Questions A4, B10-B12, C8, C11, D5, E4, E5, F5 and F6 were developed based on questions received by NIH. These questions do not signify any changes in policy or procedure.

• NIH has responded to a number of questions about issues already addressed by the January 11 version of the FAQs, and have made a number of small changes to many of these FAQ questions to improve their clarity. The biggest change made is to the wording of FAQs B1-B5. These clarifications to the existing FAQ do not signify any changes in policy or procedure.

• The January 11, 2008 FAQ uses the term “article” as a generic word for a peer-reviewed scientific publication and all its versions. At the March 20 Open Meeting, some stakeholders commented that ‘article’ could be confused with the term “final published article”. Therefore, this FAQ uses the term ‘paper’ instead of ‘article’. NIH will be updating the website to reflect this change as well.

Libraries for the Future (LFF) announces an expansion of Fit for Life (FFL), a national program to help public libraries promote lifelong health and wellness through locally-created programs. A central component of FFL will be its organization around five pillars of brain health that have emerged from the latest scientific research: diet, physical exercise, intellectual challenge, mental stimulation through new experiences, and socialization.

A grant from the MetLife Foundation has allowed LFF to offer training and grants of $10,000 to $25,000 to 15 urban library systems. Fit for Life will extend grant awards to 15 urban library networks. Each participating library will be required to submit a proposal in collaboration with at least five community organizations, to expand possibilities for community outreach and activities. FFL libraries will be charged with launching community-wide public awareness campaigns to promote the importance of fitness and nutrition, offering health programming for individuals of all ages, distributing free health publications, and recording accomplishments related to all of the above.

For the application, click here: http://www.fitforlifelibraries.org/RFP.html

Here are some interesting data from the American Library Association’s (ALA) blog Marginalia:

As of April 18, 2,671 participants were in ALA’s Facebook group

ALA’s National Library Week 2008 events attracted 2800 visits from around the globe in Second Life

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Read more at Conversations at ALA: http://discuss.ala.org/marginalia/2008/04/30/conversations-at-ala/