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?

Partners on the Health Care Team: Librarians Collaborating with Nurses

Guest post by Annie “Nicky” Nickum, BSN, MLIS, AHIP, and Rebecca Raszewski, MS, AHIP, faculty and nursing liaison librarians at the University of Illinois Chicago.

Occasionally we focus on the intersection between libraries and special clinical practices. Librarians are important partners for nurses who seek to improve their practice within their workplace and continue to be indispensable as nurses start their professional and academic careers.

There are many ways librarians contribute to nursing education with the ability to provide expertise on evidence-based research and research strategies for clinical questions. Librarians collaborate with nursing faculty by conducting literature reviews, collaborating on manuscripts, and teaching students. Our patrons range from students just getting started in nursing to faculty and practice leaders within the field, all having access to our library’s resources. We teach them how to search the literature for projects contributing towards completion of their degree whether it be Bachelor’s, Master’s, Doctor of Nursing Practice, or PhD.

The support and partnerships librarians provide to nurses is nuanced and varied. It is dependent on the type of relationship the library has with the given hospital and the nature of their clinical query. At the University of Illinois Chicago, we have a teaching hospital.  Within hospital settings, librarians may also be involved in educational initiatives within nurse residency programs for new nurses or specific programs for nurses who want to conduct evidence-based practice or research. This goes hand in hand with preceptor support for nurses mentoring students. Librarians may provide orientations and collaborate with residency directors and preceptors to develop quality improvement projects.

Hospitals that are pursuing or have Magnet status (the highest credential for a nursing facility within the United States) will usually have a shared governance model in place where nurses of all educational levels advocate for nursing’s role in patient care. Nurses are involved with reviewing updated hospital guidelines and protocols, providing an opportunity to make sure nursing practice is reflected.

Librarians may be members of nursing- and hospital-wide councils — supporting quality improvement initiatives conducted by nurses or other health care professionals by providing the latest evidence. Examples of literature searches that have been conducted at our institution include:

  • Interprofessional patient rounds,
  • Delivery of care in labor and delivery for obese pregnant women, and
  • Examples of the SBAR Tool (Situation, Background, Assessment, Recommendation), which is a technique used for communication and often used in electronic health records. 

The literature that librarians provide lays the foundation for improving patient safety and contributing to staff empowerment.

At the University of Illinois Chicago, we’ve been involved in an external collaboration with nursing faculty. The NExT Project has provided free continuing education to public health and school nurses since 2014. In 2021, the modules were expanded to include ambulatory care nurses. Nurses can go through the modules created by library and nursing faculty on the evidence-based practice process, which involves how to find evidence, appraise the evidence, translate the evidence, and disseminate what they found. These modules give nurses from workplace settings with limited resources the opportunity to learn about evidence-based practice, exemplifying that searching for and implementing evidence-based practice(s) is possible in any work setting.

Librarians are critical to the success of health care teams. Throughout your career how have librarians helped you?

Annie ‘Nicky’ Nickum currently works as an Information Services and Liaison Librarian and Assistant Professor at the University of Illinois Chicago where she supports the College of Nursing and the University of Illinois Hospitals. Her research interests include consumer health literacy amongst nurses and supporting the translation of student health literacy to nursing practice. Before coming to UIC, she worked at the Library of Health Sciences at the University of North Dakota as the Nursing and Biomedical Sciences Librarian. She obtained her MLIS from the University of Wisconsin-Milwaukee in 2013.

Rebecca Raszewski, MS, AHIP is Associate Professor & Information Services & Liaison Librarian at the Library of the Health Sciences at the University of Illinois Chicago. She has worked with nursing on the Chicago campus since August 2008. Her most recent publications have focused on data management education in graduate nursing programs and nursing faculty’s awareness of information literacy standards. She is involved with the NExT Project, a library and nursing faculty partnership that provides free continuing education on evidence-based practice.

Bringing NLM to You

Guest post by Andrew Wiley, Video Producer, NLM Office of Communications and Public Liaison.

Before the COVID-19 pandemic, visitors from all over the world came to NLM for free, in-person, guided tours to learn about the largest biomedical library in the world. Visitors ranged from members of the public to students, educators, scientists, and nurses. They were introduced to many of NLM’s exciting research and information resources, such as the Visible Human Project — a library of digital images representing the complete anatomy of a man and a woman allowing visitors to discover a new perspective on the human body. Visitors could also explore the NLM Data Center, which houses the vital databases visitors know and love, such as PubMed, ClinicalTrials.gov, MedlinePlus, and GenBank.

NLM is not your typical library. During tours, visitors could interact with the investigators in our NLM Intramural Research Program who are using computational biology and computational health science approaches to solve biological and clinical problems. Visitors could also descend into the underground stacks to see medical librarians scanning the world’s largest collection of scientific and medical literature. They could also view some of the world’s oldest and rarest medical books in NLM’s extensive historical collections — discovering just a few of the features that makes NLM so unique.

While the pandemic put a temporary stop to our ability to continue with physical tours of NLM, we know that visitors are eager for a virtual alternative. That’s why we created our new NLM Welcome Page.

This is where you can start your virtual tour and explore NLM’s offerings and resources. Here you can embark on a journey to explore some of what NLM has to offer through webpages that guide you from the world’s richest collections of historical material to the most cutting-edge data of the 21st century.

We want you to be able to experience NLM’s past, present, and future, and continue to see how NLM’s research and information services directly support scientific discovery, health care, and public health.

NLM is committed to serving scientists and society. What would you like to explore at NLM?


Photo of Andrew Wiley

Andrew Wiley is a video producer and writer for NLM’s Office of Communications and Public Liaison. Before joining NLM in 2008, Andrew produced local television in Frederick, Maryland and worked as a video journalist for The Frederick News-Post.


Video Transcript (below):

Hello, I’m Dr. Patti Brennan. I’m the Director of the National Library of Medicine.

As a nurse and an industrial engineer, I’ve spent my career making sure that information is available to help people make everyday health choices and to support biological and medical discoveries.

At the National Library of Medicine, we provide trusted information to scientists, to society, and to people living every day with healthcare challenges.

For over 200 years, the National Library of Medicine has been a partner in biological discovery, clinical care decision making, and health care choices in everyday living. We began humbly as a small collection of books in the 1800’s and now have grown to massive genomic databanks accessible worldwide every day by millions of people.

As one of the 27 Institutes and Centers here at the National Institutes of Health, we have three primary missions:

  • First, we have researchers that develop the tools that translate health data into health information and health action.
  • Second, we serve society by collecting the world’s biological and biomedical literature making it useful to scientists through our PubMed resource, and to everyday people through MedlinePlus.
  • Finally, we have a mission for outreach to make the National Library of Medicine’s resources accessible to everyone through our 7,000 points of presence around the United States. We make sure that the resources of the National Library of Medicine are available through public libraries, through hospital libraries, and in schools and clinics.

Making all of the resources of the National Library of Medicine available to the public requires a very large workforce. We have over 1,700 women and men working here. We have librarians, computer scientists, researchers, and biological scientists. We have individuals who understand clinical care, and who understand how to educate the public. We work together to make sure we can deliver—24 hours a day, 7 days a week—trusted health information.

Thank you for visiting us today. We hope you will join with us as we begin our third century bringing health information to scientists and society, accelerating biomedical discovery, improving health care, and ensuring health for all globally.

Bring on the New Year!

Marking the turning of the years is a way to make peace with what is and prepare for what will be. There’s a beautiful night passage that I’ve been drawn to reflect on this week:

It is night after a long day.

What has been done has been done;
what has not been done has not been done;
let it be.
[1]

These words urge us to accept where we are without judgement as we look forward to the new year.

So, what will 2022 look like for me, my family, and NLM? I am looking forward with hopes of more togetherness – at work, with friends, and with society. I am renovating a 110-year-old home in Easton, Maryland to use as a weekend getaway and vacation home. I am looking forward to meeting neighbors and reinvigorating this beautiful, old structure. My family is looking forward to weddings, graduations, retirements, and other milestones across my nine siblings and 37 nieces and nephews. My 92-year-old mom will move to an independent living facility—bringing treasured possessions from the home she shared with my dad along with the anticipation of making new friends.

NLM has big plans for 2022 as well! We anticipate a gradual return to the physical workspace. However, we won’t be returning to work as we knew it almost 2 years ago; we’ve learned a lot about working remotely, and many staff have found joy and satisfaction with this new way of working. We expect that staff will find a balance between working on campus and working elsewhere.

NLM leadership is working with all supervisors and staff to make sure the return to the physical workspace is a safe, positive, and meaningful experience for everyone. We are tasked with discerning what type of work is best done when one is onsite at NLM and what is best accomplished when working remotely. What we don’t want is to bring our valuable workforce back to the physical NLM location only to have them sit in virtual meetings all day!

With less restrictions on travel, I expect to see our staff attending professional meetings and providing informative talks at conferences once again. This will be particularly valuable for our trainees as it helps socialize them into the professional societies that will form their lifelong career support network. I’ve empaneled a “Future of Work” council, not to plan for 2022, but to look into the distant future to envision what work might be like and how NLM can best organize itself to meet the challenges of the future.

In 2022, NLM will continue to work with the rest of NIH to rectify the impact of structural racism on science and the scientific workforce. Under the UNITE Initiative, hundreds of people across NIH are envisioning ways to create a workplace that is free of harassment, inclusive and welcoming to all, and achieves the highest level of scientific impact by engaging a diverse workforce addressing the challenges needed to eliminate health disparities.

We anticipate that the renovation of our building will continue at full speed. All of us will be challenged to call on our sense of flexibility as we move toward a stronger infrastructure that will take us into our third century.

NLM will continue to acquire, preserve, and disseminate scientific literature to make it easier for scientists, clinicians, patients, and the public to acquire information about clinical trials and health concerns, and make our genomic databases more accessible and more useful for society. Our investigators will leverage the new collaborations they forged during the COVID-19 pandemic to augment their longstanding investments in computational biology and clinical health informatics research. We will bring new scientists into our workforce and strengthen our technical and administrative services.

We’ve got a big year ahead – what would you like to see us accomplish? And, more importantly, I’d love to hear your hopes for the coming year!


[1] The Anglican Church in Aotearoa, New Zealand and Polynesia. (1988). A New Zealand Prayer Book. The Office of the General Synod. https://anglicanprayerbook.nz/167.html

Happy Holiday Season!

It’s the holiday season and a time for celebration, reflection, and catching up with family and friends. This year, I am struck by two themes: the celebration of light and darkness, and the time-honored traditions found in special foods and decorations.

For me, a winter aficionado with strong Irish roots, my holidays began with Samhain (pronounced “SAH-win”). Samhain is a Celtic festival that marks the “wintering of the world” – that necessary time of slowing down, becoming quiet, and resting. As I write this blog, millions of people across the globe are celebrating the festival of Diwali. Diwali is a five-day celebration marking the triumph of light over darkness, good over evil, and knowledge over ignorance. Families gather over Diwali in households decorated with vibrant flowers and candles, enjoying sweets in acknowledgement of the year’s bountiful harvest.

This year, Hanukkah began at sundown on November 28 and ended December 6. This eight-day Jewish holiday commemorates the rededication of the temple in Jerusalem as a festival of lights remembering the miracle of the oil lamp that burned for eight days. For those who celebrate Christmas, this is both a secular as well as a religious festival including special prayers and church services, household decorations, sparkling trees, and sweet treats. In many places you might find luminarias, small paper sacks filled with sand that support candles creating beautiful lights along streets and up pathways in many neighborhoods inspired by traditions arising from Central and South America. Kwanzaa celebrates African heritage and identity, beginning the day after Christmas lasting for several days. During Kwanzaa people light candles, eat special foods recognizing the “first fruits” of the harvest, and place special symbols around their homes.

Light plays a leading role in many winter celebrations. During this time of year, at least in the northern hemisphere, light is a cherished resource dispelling the darker days and cold weather inspiring vision and hope. Light serves as a symbol of many things to many people, but to me, light symbolizes goodness and knowledge and has special meaning to the National Library of Medicine. NLM brings knowledge to the world 24/7, and I personally take this time to remember the “light” that NLM brings to the world.

NLM has a bit less to do with food and decorations, but we are filled with books, articles, and artifacts about nutrition and symbolism. We can extend the celebration of food and decorations to NLM. In 2016, NLM’s History of Medicine division launched a special exhibition, “Fire and Freedom: Food & Enslavement in Early America.” This exhibit illustrated the important connection between meals and power dynamics – you can visit the online exhibition here. NLM’s digital collection includes pictures of holiday events across time and around the world – you can look here for a poster urging Americans to Buy Christmas Seals, Fight Tuberculosis and here for a September 1917 list of suggestions from the American Red Cross for Christmas packets for our military personnel at home and abroad.

As you experience the lights and marvel at the foods and decorations of this holiday season, in whatever way you celebrate, please take with you the good wishes of the National Library of Medicine!

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