Your Privacy is an NLM Priority

Patient privacy — you might be scratching your head right now. NLM is a research enterprise and a LIBRARY for heaven’s sake! What does a library have to do with patient privacy? NLM protects the privacy of all people who use our resources, which are free and accessible 24/7. NLM complies with requirements for privacy and security established by the Office of Management and Budget, Department of Health and Human Services, and NIH. I encourage you to visit our Privacy and Security Policy guidelines.

No personal identifying information is required to search and access our vast data repositories and library resources. Anyone, sick or well, who wants trusted information about a disease, illness, or health condition can search through our MedlinePlus online health information service. With data available in English and Spanish, MedlinePlus offers high quality, relevant health information for patients and their families on more than 1,000 topics such as children’s growth and development, gene therapies, and self-care after surgery.

We do not link search strategies to any specific patron without their permission. NLM only links information for those patrons who sign up for My NCBI, which is a service that allows patrons to save and return to previous search results. This information is held in a safe, secure part of our computer systems open only to the individual.

NLM also provides expert guidance to other federal agencies for the most effective approaches to preserving patient privacy. Clem Mc Donald, MD, our Chief Health Data Standards Officer, serves as a member of the Health Information Technology Advisory Committee, which is an advisory committee to the Office of the National Coordinator for Health Information Technology that oversees a range of issues from promoting health IT excellence in communities to collaborations among federal agencies. We recently participated in the federal response to Executive Order 13994, Ensuring a Data-Driven Response to COVID-19 and Future High-Consequence Public Health Threats, leveraging our expertise in protecting patient data and preventing inadvertent re-identification from genomic information.

Patient participation in clinical trials and other research efforts advances science and creates the pathways to discover new clinical therapies and interventions. Sometimes, data generated in one study becomes useful in future studies; for example, when trying to understand how different groups of patients respond to the same therapy. NLM provides technical assistance to the National Institutes of Health in creating ways to store participant-level study information safely and securely making information useable for other researchers while making sure that personally identifiable information is not disclosed. We also help NIH create safe, secure data repositories of research data and implement mechanisms and oversight measures to ensure that data is available to researchers and managed in a way consistent with the original agreements for use of the data. We helped establish NIH’s Researcher Auth Service Initiative, a single sign-on for researchers that allows access to specific data sets in a controlled manner.

Our researchers also develop computational methods to protect patient privacy. This includes research investigating how to remove traces of identifying data from clinical records, while making those records useful for researchers to better understand the course of disease and determine the effectiveness of treatments. NLM’s Dr. Mehmet Kayaalp develops ways to let approved researchers use clinical records for clinical studies in a way that protects patient privacy. He describes his work this way:

Narrative clinical reports contain a rich set of clinical knowledge that could be invaluable for clinical research. However, they usually also contain personal identifiers that are considered protected health information and are associated with use restrictions and risks to privacy. Computational de-identification seeks to remove all of the identifiers in such narrative text in order to produce de-identified documents that can be used in research while protecting patient privacy. Computational de-identification uses natural language processing tools and techniques to recognize patient-related individually identifiable information (e.g., names, addresses, and telephone and social security numbers) in the text and redacts them. In this way, patient privacy is protected, and clinical knowledge is preserved.

Dr. Mehmet Kayaalp

So – we’re more than a library. We are a partner in preserving patient privacy while making sure that researchers and clinicians can discover the best new ways for taking care of patients.

How do you think NLM can better serve scientists and society?

Ending the HIV Epidemic: Equitable Access, Everyone’s Voice

A guest post by Amanda J. Wilson, Chief, Office of Engagement and Training; Leigh Samsel, NLM Planning and Evaluation Officer, Office of Strategic Initiatives; and Elizabeth A. Mullen, Manager of Web Development and Social Media, History of Medicine Division, National Library of Medicine at the National Institutes of Health.

This year’s theme for World AIDS Day is Ending the HIV Epidemic: Equitable Access, Everyone’s Voice. As the world’s largest biomedical library, NLM has a long history of supporting NIH’s efforts to end the HIV epidemic by providing equitable access to trusted biomedical information, supporting biomedical research, and highlighting the historical, social, and cultural context of this research. Expedient, reliable, free public access to NLM’s trusted biomedical information resources and literature collections advances the knowledge and treatment of HIV/AIDS worldwide, helps progress research to end the HIV epidemic and improves the health of people living with HIV.

Improving HIV/AIDS Health Information Access

NLM integrates multiple types of HIV literature, sequence, testing, and clinical trials data into a portfolio of resources that enables researchers to easily find related information and robustly supports global research to end the HIV epidemic. Free public access to citations to the scholarly literature is provided through NLM’s PubMed and Bookshelf, while free access to full-text is provided through PubMed Central and NLM Digital CollectionsGenBank and the Sequence Read Archive allow researchers to deposit and access publicly available DNA sequences, including HIV experimental and clinical genome sequences. NCBI Virus makes HIV and other virus sequences from RefSeq, GenBank, and other NLM repositories available. The HIV-1 Human Interaction Database includes information gleaned from literature about the interaction between human and HIV-1 genes and proteins.

NLM also provides a rich resource of easy-to-understand online health and wellness information available in English and Spanish via MedlinePlus. Among its wealth of content, MedlinePlus contains several HIV/AIDS topical pages. NLM supports an equitable distribution of information by providing resources and support to strengthen skills and literacies needed to access and use biomedical information for those affected by HIV/AIDS. The Network of the National Library of Medicine provides free health information training, from webinars to instructor-led classes to on-demand tutorials. Additional trainings on a variety of topics are added weekly.

A Long History of Support

NLM’s engagement and collections activities strive to capture the many voices in and around the HIV epidemic. A key historical partnership for engagement with the NIH Office of AIDS Research was the HIV/AIDS Community Information Outreach Program; beginning in 1994 as a resource for community-based organizations to improve the knowledge, skills, and technical means to access and provide the latest authoritative prevention, treatment, and research information electronically. The current iteration of the program concludes this month with 200 plus organizations conducting more than 350  projects in 38 states providing training, communications campaigns, and enhanced products and apps to raise awareness of HIV/AIDS information and discoveries over the 40-year history.

NLM has been collecting publications and archival materials related to HIV/AIDS since the first Morbidity and Mortality Weekly Report on the topic was issued in June 1981. The NLM HIV/AIDS Web Archive offers more than 150 websites documenting the biomedical, clinical, cultural, and social aspects of HIV/AIDS in the early 21st century. This month you can look for new additions and resources.

World AIDS Day 2021

Screen shot of NLM's History of Medicine Division's exhibit entitled "AIDS, Posters and Stories of Public Health"

This month, to help mark World AIDS Day, NLM will launch a new online exhibition—A People’s History of Pandemic: AIDS, Posters, and Stories of Public Health. The NLM exhibition will cover the archive of public health posters about AIDS rooted in the cultural output of artists, activists, and community workers. Their work, specifically the use of personal narrative as a visual-art strategy, along with language and the collective process of creating AIDS posters, continues to broadcast the message that, 40 years after the crisis began, attention to AIDS has not diminished. In mid-December, NLM’s Profiles in Science, will release a curated collection of digitized primary source materials related to the United States National Commission on AIDS, dating from the mid-1980s through the early 1990s. Learn more about the diversity of NLM’s historical collections related to HIV/AIDS on Circulating Now.

As we mark this year’s World AIDS Day, NLM is proud to continue its efforts to provide global access to trusted resources; share the voices of those affected by HIV; and provide the foundation for researchers, clinicians, patients, and families to engage and answer the call to end the HIV epidemic.

Photo of Amanda Wilson

Amanda J. Wilson is Chief of the NLM Office of Engagement and Training (OET), bringing together general engagement, training, and outreach staff from across NLM to focus on NLM’s presence across the U.S. and internationally. OET is also home to the Environmental Health Information Partnership for NLM and coordinates the Network of the National Library of Medicine.

Photo of Leigh Samsel

Leigh Samsel, MS, is responsible for formal reporting of NLM activities and for providing staff leadership to strategic planning activities. Leigh is currently serving as NLM’s AIDS Coordinator to the NIH Office of AIDS Research.

Photo of Elizabeth Mullen

Elizabeth A. Mullen, MS, is Manager of Web Development and Social Media for the History of Medicine Division (HMD) and Managing Editor of Circulating Now, a blog featuring new research, curatorial insights, and news about NLM’s historical collections.

Reflect, Reimagine, Reenergize TOGETHER

Guest post by Patricia Flatley Brennan, Director, NLM; Dianne Babski, Associate Director for Library Operations, NLM; and Amanda J. Wilson, Chief of the Office of Engagement and Training, NLM.

Welcome to NLM @ MLA ’21 vConference! This year, for the Medical Library Association (MLA) virtual meeting, we organized NLM’s activities around three themes:

  1. Reflect on the impact of the past year,
  2. Reimagine our work to make what we do better, and
  3. Reenergize by reconnecting with NLM colleagues and embracing the new normal! 

This year offered many opportunities to pause and reflect. We were struck by the emergence of the COVID-19 pandemic, the global response of lockdowns, personal adoption of public health measures, and more than 1.7 billion vaccine doses already administered worldwide. Our reflections led us to a reaffirmation of the importance of medical libraries as a source of trusted health information and the critical need for work-life balance in everyone’s lives. Like others around the world, we looked on in horror and dismay at repeated episodes of violence and injustice inflicted upon communities of color. We hope that our partners around the country will join the momentum surrounding the NIH UNITE initiative to end structural racism and racial inequalities in the health research enterprise.

The maximum telework posture of NLM and many other industries prompted reimagining our work life now and in the future. We structured many of our NLM @ MLA ’21 presentations to share our experiences of working at a distance, video conferencing, and providing library services during a time when the physical doors of libraries are closed.

We hope that the opportunity to gather in spirit, rather than in person, brings the reenergizing atmosphere that often comes with greeting old friends and meeting new colleagues. We hope you’ll take advantage of the opportunities to gather around professional conversations and social engagement.

NLM at the Medical Library Association 2021 vConference

NLM’s participation at the MLA ’21 vConference began on May 17th and will continue through May 27th. One of the advantages of a virtual symposium is that you’re not restricted to viewing a session once – all NLM sessions will be available online after May 27th.

NLM began this year’s conference with a full day symposium introducing the 2021-2026 Network of the National Library of Medicine (NNLM). The day started with a celebration of NNLM accomplishments to date, particularly over the last 5 years. This session attracted more than 250 attendees who reflected on where NLM has been. For example, do you know the highest number of regions that the NNLM ever had? Was it 9, 11, or 50? Or, how much outreach funding NNLM awarded to communities in the last year? Over or under $1 million? This session also provided an overview of how the Network has been reimagined for the 2021-2026 cooperative agreement, and is being reenergized though exciting and innovative programming and projects. Find these answers and what else is in store for the Network on the NNLM @ MLA day page!

During last week’s dedicated exhibit time, we hosted 33 one-hour Meet the Experts sessions, involving over 50 speakers covering a wide range of topics including data science practice, PubMed and PubMed Central, tools for scholarly publishing, the 2020-2021 Associate Fellows cohort and projects, intramural training at NLM, consumer health resources, health data standards, and many more – whew! The “NNLM Reading Club: A Vehicle for Starting Health Conversations” took top marks for being the most popular session.

We also provided special highlights of NLM’s response to COVID-19 in the Exhibitor Solution Showcase. NLM’s Dina Demner-Fushman, MD, PhD, Valerie Florance, PhD, Yanli Wang, MD, PhD, Amanda Wilson, MSLS, and Robin Taylor, MLIS, presented on topics such as TREC-COVID, a competition applying national language processing to resolve challenges related to COVID-19; the Rapid Acceleration of Diagnostics projects designed to speed COVID-19 testing, and to identify new ways of detecting COVID-19 in people and in the environment (think of an electronic nose or waste water sampling); the Post-Acute Sequelae of SARS-CoV-2 Infection Initiative, now known as ReCOVer; and how common data elements are making the data acquired through COVID-19 studies harmonized and available for researchers in the future. 

Teresa Zayas Cabán, PhD, NLM’s Assistant Director for Policy Development, presented updates and priorities from NLM and NIH at the Legislative Update session, and, not-for-profit Stop Foodborne Illness executive, Mitzi D. Baum, MS, delivered remarks on the topic of public health and food safety as the keynote speaker for this year’s Joseph Leiter NLM/MLA Lectureship. You can take a deep dive into the NLM@MLA’21 website where you can find links to the 2021 Leiter Lecture recording; NLM and NNLM On-Demand Presentations, Lightning Talks; Immersion Sessions; biographies for NLM and NNLM staff participating in the Meet the Experts sessions; and more!

As we close out our participation in the MLA ’21 vConference, our last don’t miss events are:

  • Take a Break with Dr. Patricia Flatley Brennan on May 26 at 6 pm (CT). Join Dr. Brennan for a signature trivia evening break. Join Us!
  • The ever-popular, annual NLM Update, May 27 at 10:15 am (CT), this year featuring NLM Director Patricia Flatley Brennan, RN, PhD; Associate Director for Library Operations Dianne Babski; and Acting Director, Lister Hill National Center for Biomedical Communications, Olivier Bodenreider, MD, PhD.

Reflect. Reimagine. Reenergize.

As we reflect on our experience at the MLA ’21 vConference, our interactions with colleagues has provided even more insight to reimagine our work to make what we do better, and reenergize as we embrace the new normal!

Which element of this year’s theme do you relate to most? Why?

(left to right)
Dianne Babski, Associate Director for Library Operations at NLM
Patricia Flatley Brennan, RN, PhD, NLM Director
Amanda J. Wilson, Chief, Office of Engagement and Training at NLM

What Health Literacy Outreach Looks Like at NLM

Guest post by M. Nichelle Midón, Project Scientist, Office of Engagement and Training, National Library of Medicine.

Earlier this year, NLM Director Dr. Patricia Flatley Brennan shared insights about how we, at NLM, support individual and organizational health literacy. As the world’s largest biomedical library, NLM provides physical and digital access to trusted, quality health information with the ability to reach people where they live, work and play.

One way we do this is through our Network of the National Library of Medicine (NNLM), which leverages more than 8,000 academic health science libraries, hospital and public libraries, and community organizations across the United States to promote health literacy and ensure that NLM resources are accessible to the public. NNLM develops and offers programs that affect communities in meaningful ways.  

One of NNLM’s recent success stories is Project TORDS (Technology Outreach to Reduce Health Disparities and Stigma). Tony Nguyen, MLIS, AHIP, executive director of the NNLM Southeastern Atlantic Region, recently described the program, saying “Project TORDS is designed to increase access to technology in rural and underserved communities in southern West Virginia by providing training on the use of technology while showing participants how to access, evaluate and use online health information, such as NLM’s MedlinePlus.”

According to Darryl Cannady, the executive director of South Central Educational Development, Inc., a local, community-based organization participating in Project TORDS, “Living in rural, poverty stricken Southern West Virginia, where residents live with many health disparities and social determinants of health, we have to create innovative ways to reach the most disenfranchised communities and provide the needed access to health education and access to quality health care. Project TORDS helps bridge gaps and connect the dots to health education and resources, while simultaneously reducing stigma through education.”

Watch all about it: Project TORDS

Click to learn more about the impact of Project TORDS.

Other NNLM health literacy outreach programs include the Wash and Learn and Promotores de Salud programs.

The Wash and Learn program transforms local laundromats into informal learning spaces where people can access early-learning literacy materials as they wait for their clothes to wash and dry.

NLM’s outreach to Promotores de Salud, the Spanish term for “community health workers,” reaches vulnerable and underserved members of the Latino/Hispanic community with health information and resources.  These outreach efforts include sessions that promote awareness of culturally appropriate health information from NLM.

Watch all about it: Wash and Learn

Click to watch how NNLM supports improving health literacy at a local laundromat.

Watch all about it: Promotores de Salud

Click to watch Promotores de Salud in action.

Join us in celebrating Health Literacy Month this October – what does health literacy month mean to you?

M. Nichelle Midón works with NLM’s National Network of Libraries of Medicine (NNLM) to provide researchers, health professionals, public health workforce, educators, and the public with equal access to biomedical and health information resources. She holds a Bachelor of Science in public health from the University of North Carolina at Chapel Hill, a Master of Science in library and information science from the Catholic University of America, and a Master of Science in instructional technology from Towson University.

The Wonder of Everyday Things

As I write this, the National Institutes of Health campus is blanketed with a light dusting of snow. The roads and paths are clear, but the grass is covered everywhere. As I walked past the day care building, I spied a dad watching his toddler girl crunch through the snow-covered grass. She slid one way and stomped another, in all ways just delighting in it. Her whole face, especially her eyes, conveyed joy and amazement. Watching her was so enjoyable that I had a hard time moving on, toward Building 38 and the work that awaited me.

This little scene reminded me of a sentiment that’s been shared with me by many NLM patrons and stakeholders around the world: A library is a place to experience the wonder of everyday things.

Indeed, a library provides a window to the wonders of the world, from scientific discoveries to historical artifacts to new ideas about the universe. But it’s also a repository, of sorts, of many everyday things. People approach a library with questions big and small, and they leave with greater understanding and new ideas. Perhaps a library can be described as a platform to experience wonder.

For many people, the idea of a library is filled with the experiences of youth. Maybe you were taken to the library by a parent, teacher, or sibling. Or maybe you visited a bookmobile, like I did, that traveled around bringing all sorts of books to your community. Did you, like Maria, a woman I worked with once in homeless shelter, bring your family to the downtown library each Saturday, so your children had a warm, safe place to read and explore? Perhaps you were brought to the NLM reading room when your mother perused our holdings in the course of her studies. Did your school have a library, or learning resource center, for further exploration outside the classroom? Did you feel like a grown-up when your youth library card was replaced with a regular one, giving you access to everything in the “adult room”?

I hope you still experience some of that childhood excitement when you approach and use the resources of the National Library of Medicine. While only a few people physically enter our library building now, every day over 3 million people connect with us online — to find articles, review what’s new in their field, explore the relationship between genes, find potential targets for new cancer chemotherapies, and so much more.

As a 21st-century library, NLM faces the challenge of how to create the special environment of the physical libraries that many of us experienced when we were young. To me, it truly is a bit less satisfying to tap on a keyboard than to walk through the stacks and pull down a book with an interesting title. We’ve yet to create the electronic equivalent of the hum of library patrons talking to each other or the reference librarian. And we haven’t captured that unique smell of old books and periodicals, which strengthened our sense of connection with the people who had opened and read those same pages before us.

The world has become more complicated, and the need for libraries and their services has only continued to grow.

To serve our users’ changing needs, NLM is constantly looking for new ways to construct searches or present results or display images of our holdings. And while the practical concerns surrounding the transmission of knowledge seem to be our focus, I’m always thinking about how we can deliver that knowledge in a way that sparks wonder in everyday things. Please share how we can do this for you!

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