The National Library of Medicine (NLM) has launched a Web content collecting initiative. The Library is selecting Web content as part of its mission to collect, preserve, and make accessible the scholarly biomedical literature, as well as resources that illustrate a diversity of philosophical and cultural perspectives not found in the technical literature. New forms of publication on the Web, such as blogs authored by doctors and patients, illuminate health care thought and practice in the 21st century. In launching this initiative, the Library is capturing and providing a unique resource for future scholarship.

The Library’s inaugural collection of Web content is “Health and Medicine Blogs,” presenting the perspectives of physicians, nurses, hospital administrators and other individuals in health care fields. The collection also includes patients chronicling their experiences with conditions such as cancer, diabetes and arthritis. The site currently contains 12 blogs, including KevinMD.com, “social media’s leading physician voice;” Not Running a Hospital, a blog by a former CEO of a large Boston hospital; e-patient Dave, a cancer survivor and leader in the participatory medicine movement; and Wheelchair Kamikaze, who writes about his personal experience living with multiple sclerosis (MS).

Guided by the NLM Collection Development Manual and other strategic collecting efforts, NLM will continue to expand its capacity to collect Web content. With this initiative NLM has taken a major new step in its mission to collect pertinent health care information of today for the benefit of research in the future. Increasingly, that information is found on the Web, which is a rapidly changing environment, where valuable and interesting materials can surface and then quickly disappear. The Library is working to ensure it can effectively collect new material in a Web environment, and guarantee the material’s permanence and availability to current and future patrons.

In launching this initiative, NLM joins many other national, state and public libraries and archives that have acknowledged the importance of preserving Web content for future generations. In addition to the Internet Archive, which has been broadly archiving the Web since 1996, dozens of libraries and cultural heritage institutions have been engaged in thematic or event-based collecting. This community has contributed to the development and use of common tools, techniques, and standards that enable the creation of Web archives. NLM has benefitted from this work and from local partners such as the Library of Congress, which is actively engaged in collecting and preserving Web content. The NLM has already been archiving portions of its own Web domain considered to be of enduring value. With this new effort, the Library is now collecting Web content that others have created.

Check out the November issue of NIH News in Health, the monthly newsletter bringing you practical health news and tips based on the latest NIH research. In this edition:

Your Microbes and You: The Good, Bad and Ugly
Trillions of microscopic creatures—like bacteria, fungi and viruses—are living in and on your body right now. We tend to focus on destroying bad microbes. But taking care of good ones may be even more important.

Gut Feelings About Gastritis: When Your Stomach’s Sick
Your stomach lining has an important job. It makes acid and proteins that help break down the foods you eat. But when the lining gets inflamed—a condition called gastritis—it can cause long-term problems.

Health Capsules:

• Brain Cleaning System Discovered
• Bilingual Booklet on Sports Injuries
• Featured Website: ClinicalTrials.gov

NIH News in Health is available online in HTML and PDF formats, and print subscriptions are available free of charge.

Increasing evidence suggests that there are benefits to actively involving patients and consumers in their health care. There is also growing interest in engaging patients and consumers more actively in the research process. Comparative effectiveness research (CER), patient-centered outcomes research (PCOR), and quality improvement (QI) all offer opportunities to engage patients in generating information that can be used to inform treatment decisions. A new seven-page resource, based on work conducted by AcademyHealth under the auspices of the Electronic Data Methods (EDM) Forum, and developed in coordination with patients, consumers, and health services researchers, outlines key opportunities for engagement in research, and proposes a set of activities to enable patients and consumers to become more active participants in the process of evidence generation. A Framework for Patient and Consumer Engagement in Evidence Generation is now available for download to an iPad through the iTunes app store. This publication can only be viewed using iBooks 2 or later on an iPad with iOS5 or later.

The Electronic Data Methods (EDM) Forum operates on a three-year grant from the Agency for Healthcare Research and Quality (AHRQ), to facilitate learning and foster collaboration across a set of CER projects, designed to build infrastructure and methods for collecting and analyzing prospective electronic clinical data. To ensure EDM Forum activities address a full spectrum of research needs, the EDM Forum seeks to obtain perspectives from a broad array of stakeholders, by encouraging an open and ongoing dialogue on their web site.

Do you wonder if droughts are related to climate change? If so, please consider visiting Tox Town’s newly released Drought Location page. Information is provided on why drought is a concern, how it relates to climate change, and possible health affects related to drought. The page is also available in Spanish, Sequía.

The best known U.S. drought was the Dust Bowl drought of the 1930s, when 65% percent of the country was affected by severe or extreme drought. In the summer of 2012, 55% of the continental United States experienced moderate to extreme drought, which was the largest such area since 1956.

The National Library of Medicine recently released two enhancements to MedlinePlus Connect. MedlinePlus Connect now returns responses for medication information in Spanish. Also, the MedlinePlus Connect Web service delivers more targeted information when responding to medication information requests. In September 2012, NLM enhanced the MedlinePlus Connect Web service response for medication code requests. Previously, the MedlinePlus Connect Web service returned a link to a search results page with the best matches from the MedlinePlus drug information. Now, the enhanced Web service returns direct links to relevant drug information pages on MedlinePlus.

Starting in October 2012, MedlinePlus Connect returns requests for medication information in Spanish. This complements MedlinePlus Connect’s responses for diagnosis and lab test information, which were already available in both English and Spanish. MedlinePlus Connect processes requests for Spanish medication information differently from requests for English medication information. For Spanish medication information, MedlinePlus Connect responds only to National Drug Codes (NDCs) or RxNorm Concept Unique Identifier (RXCUIs). It does not use text strings, which are accepted for requests for English medication information. It is possible to have a response in English and not in Spanish.

MedlinePlus Connect is NLM’s service for patient portals and electronic health record (EHR) systems, to link to patient-friendly and context-relevant information from MedlinePlus. It responds to code-based requests, and delivers information for patients that relates to a specific diagnosis, medication or lab test. Full details on sending requests for medication information, either to the MedlinePlus Connect Web service or the Web application are available on the technical information page.

The National Library of Medicine is developing and testing several new technologies which may help transform the way hospitals keep track of patients during emergencies. The People Locator and the Patient Tracking and Locating System are research projects being conducted as part of the public-private Bethesda Hospitals’ Emergency Preparedness Partnership (BHEPP). The People Locator, which is part of the Lost Person Finder, is an online “lost and found” Web site, that can include a person’s name, gender, age, health condition, and any available photo, to assist family members, emergency officials, and others during a disaster search. The Patient Tracking and Locating System, produced by NLM’s Office of Computer and Communications Systems (OCCS), consists of a commercial digital pen that captures patient information via a tiny camera, and tracking of disaster patients and equipment with radio frequency identification (RFID) tags in a real-time location system (RTLS). This system would allow broadcasting of patient location and condition to care providers at a central location, and a software application devised by the OCCS could be used to transfer patient records electronically between hospitals.

The BHEPP formed in 2004, to develop a coordinated disaster response model for hospitals across the country. BHEPP partners include the NLM and three nearby hospitals; the National Institutes of Health (NIH) Clinical Center, Walter Reed National Military Medical Center, and Suburban Hospital Johns Hopkins Medicine, a non-profit community-based hospital in Bethesda, MD. In addition, NLM’s Disaster Information Management Research Center (DIMRC) also has projects under development, including the Military Affiliate Radio System (MARS), a back-up communications system for hospital emergency operations centers, and the Hospital Incident Command Center, a responder training research project that uses “virtual world” technologies. Further details about these projects are available in the NLM in Focus newsletter.

The October 2012 issue of NIH News in Health is now available online! NIH News in Health is a monthly newsletter providing practical health information from NIH’s medical experts and is based on research conducted either by NIH’s own scientists or by universities and medical schools around the country. This issue features:

• Looking Inside: Get the Facts About Radiation
• Can’t Curb the Urge to Move? Living With Restless Legs Syndrome
• Antibodies Protect Against Range of Flu Viruses
• MRI Shows Promise for Heart Procedures
• Featured Website: College Drinking: Changing the Culture

NIH News in Health is available in HTML, PDF, and print formats.

In November, 2010, the federal Office of the National Coordinator for Health Information Technology (ONC) convened the Southeast Regional HIT-HIE Collaboration (SERCH) project on Health Information Exchange in Disaster Preparedness and Response. The consortium included representatives from Alabama, Arkansas, Florida, Georgia, Louisiana, and Texas, with the goal of developing a strategic plan for sharing health information data among the Southeast and Gulf States during and following a declared natural disaster. The consortium members carefully assessed the challenges of accessing medical records and coordinating health care information for patient populations displaced due to a disaster. To date, there has been limited research on how HIE could be leveraged to provide timely access to clinical information in response to a disaster. The best way to ensure that health information can be accessed during an emergency is to ensure that it can be accessed during routine care. As connectivity through HIE expands, opportunities to link exchange efforts with emergency preparedness and response to provide health information to providers and patients in response to a disaster will increase.

The final report from the project, released in July, 2012, includes an actionable plan for incorporating health information exchange into disaster preparedness efforts. The phased approached suggested by SERCH supports immediate progress in the absence of routine, widespread health information exchange. It also addresses key legal, technical, and governance issues and offers a list of steps that states can take to align their health information exchange planning activities with ongoing emergency preparedness activities. The report includes five recommendations, which offer a path forward for states wishing to integrate disaster planning and health information exchange efforts, to help ensure that when a disaster strikes, patients and providers will have better access to information, and providers will be better able to provide appropriate care.

At the turn of the 21st century, several important reports and events designed to raise awareness of health disparities and describing initial efforts to reduce health disparities took place. The Surgeon General’s office released several reports that showed dramatic disparities in areas such as tobacco use and access to mental health services by race and ethnicity. Then legislation was enacted focusing on reducing health disparities, and creating the National Institute on Minority Health and Health Disparities, as part of NIH. In 2001, the Institue of Medicine released its landmark report, Crossing the Quality Chasm: A New Health System for the 21st Century, highlighting the importance of a focus on health care quality rather than a focus on access and cost issues.

Building upon these reports and events, the IOM held a workshop on April 8, 2010, to discuss progress made towards addressing health disparities, and focusing on the success of various federal initiatives to reduce health disparities. Today marks the release of the following document summarizing the workshop, How Far Have We Come in Reducing Health Disparities?: Progress Since 2000 – Workshop Summary.

The September 2012 issue of NIH News in Health is now available online! NIH News in Health is a monthly newsletter providing practical health information from NIH’s medical experts and is based on research conducted either by NIH’s own scientists or by universities and medical schools around the country. This issue features:

• See, Hear, Speak: Are Kids’ Senses Ready for School?
• Safe Driving for Distracted Teens: Steering in the Right Direction
• Household Mold Linked to Asthma in Children
• Video Looks at the Science of Yoga
• Featured Website: 52 Weeks for Women’s Health

NIH News in Health is available in HTML, PDF, and print formats.