Health Data Standards: A Common Language to Support Research and Health Care

Guest post by Dianne Babski, Associate Director for Library Operations and Robin Taylor, MLIS, National Library of Medicine

Every day we benefit from data standards, and every day most of us don’t even notice it! Did you wear a seatbelt today? Take a precise dose of medicine? Send an email? Plug a laptop into an outlet? These are examples of activities that are made possible through data standards. At NLM, we think a lot about data standards, particularly health data standards.

NLM partners with organizations such as the Office of the National Coordinator for Health Information Technology (ONC) to promote health data standards for data captured in electronic health records (EHRs), clinical research, and other health information systems. With a focus on how health data are collected, stored, described, and retrieved, health data standards make up the backbone of interoperability. This provides the ability to connect and seamlessly share data between computerized systems and allows for the information exchange between other applications and databases.

Let’s look at a current example where health data standards, a common data language, have had a real impact. When SARS-CoV-2, and the disease it causes, COVID-19, emerged in late 2019, researchers around the world began planning studies to figure out how to combat this global pandemic. Research questions, such as, “What date did the patient first display COVID-19 symptoms?” arose continuously. It sounds like a simple question, but there are so many ways to ask the question, and even more possible responses. If researchers apply health data standards in their investigations — if they ask questions and collect responses in a standardized way — the data they collect can be combined and compared with data from other COVID-19 studies and EHRs. This enables reuse of data across multiple sources, which increases statistical power and accelerates our understanding of this disease.  

For more than 20 years, NLM has served as the central coordinating body for clinical terminology standards nationally. Our long-standing efforts to establish common health terminology supported the COVID-19 response by allowing access to near-real time clinical information to guide the diagnosis, treatment, and prevention of this disease.

NLM supports multiple vocabulary standards and mappings, like RxNorm, SNOMED CT, and the UMLS, as well as terminology tools like AccessGUDID, DailyMed, MedlinePlus Connect, MetaMap, the Value Set Authority Center (VSAC), and the NIH CDE Repository, a database that provides access to structured human and machine-readable definitions of common data elements, more commonly referred to as CDEs.

CDEs are one type of health data standard that can help researchers normalize data across studies. CDEs are standardized, precisely defined questions that are paired with a set of specific allowable responses, then used systematically across different sites, studies, or clinical trials to ensure consistent data collection.

CDEs are in use across NIH, to varying degrees. Some NIH institutes and Centers have had mature CDE programs for years; others are just beginning to develop. NLM has been involved with CDEs since 2012 and plays a key role in encouraging CDE adoption across NIH by:

  • Hosting the NIH CDE Task Force (CDETF), a trans-NIH community of practice.
  • Forming a CDE Governance Committee that reports to the CDETF. The committee’s primary charge is to decide whether common data elements submitted to them by NIH recognized bodies (NIH Institutes, offices, etc.) meet criteria that merit their recommendation for use in NIH-funded research.
  • Maintaining the NIH CDE Repository, a central access point to data elements that have been recommended or required by NIH Institutes and Centers for use in research and for other purposes. In 2020, we completed a usability study of the NIH CDE Repository and have been implementing enhancements based on the recommendations.

This year, while continuing to enhance the usability of the NIH CDE Repository, we will also engage with users through a CDE awareness and training campaign.

Ms. Babski is responsible for overall management of one of NLM’s largest divisions with more than 450 staff who provide health information services to a global audience of health care professionals, researchers, administrators, students, historians, patients, and the public.

Robin Taylor, MLIS, joined NLM in 2016. Since 2018, she has been the lead for the NIH Common Data Elements Repository.

Dr. Martin Luther King, Jr. – Awesome and Inspiring

Today, our country honors the birth, life, and dream of Dr. Martin Luther King, Jr.

Recently, I had the opportunity to take my mom to visit the Martin Luther King, Jr. Memorial in Washington, DC. We observed social distancing and mask wearing. While the weather may have been chilly, the atmosphere was filled with warmth and with hope.

Mom and I walked through the Mountain of Despair to the Stone of Hope and read many of the phrases chosen by a special “Council of Historians” to reflect Dr. King’s life and teachings of justice, democracy, hope and love. I was grateful that someone who is such a giant to me and so many others all over the world held perch as a monolith overlooking the Tidal Basin, facing the Lincoln Memorial and the Jefferson Memorial, with the Washington Monument in sight. I was most struck with the rendering of Dr. King’s gaze, which looked not out at the monuments to great leaders, but directly towards the people milling below the statue – looking at those left to continue his legacy.

This is a special place for contemplation and reflection. Dr. King’s words, “Out of a mountain of despair, a stone of hope” seem particularly relevant today as we move through the global COVID-19 pandemic. There are many reasons to despair – economic problems, health challenges, and loss of loved ones. As Director of the National Library of Medicine, I often think about how we can keep our scientists and society strong by serving as a stone of hope. NLM provides high-quality information to help researchers advance their understanding of the SARS-COV2 virus (the virus that causes COVID-19), and discover new vaccines and treatments. We provide relevant, evidence-based, and actionable information for the public to guide their everyday health behaviors.

As I read one of the inscriptions, I was struck by a parallel to contemporary expressions about how to overcome the consequences of the pandemic and the role we can play to advance change. Dr. King said in a 1968 speech that “the arc of the moral universe is long, but it bends toward justice.” While not specifically speaking of the moral universe, how many times during this pandemic have we heard about the importance of bending the curve of new coronavirus cases? I was struck both by the visual cue of a bending curve, and the idea that caring for the health of the public, through information and individual action, aligns well with the concept of the moral universe.

I take pride in the fact that NLM and its research and information services – at their core —are of service to the public. I hadn’t quite thought of our efforts as part of the moral universe. Thanks to an inspirational visit honoring a beacon of light, I have found new meaning in the work that we do for science and society.

What inspires you? What broader purpose have you found in your efforts?

MedlinePlus Connect: 10 Years of Linking Electronic Health Records to Consumer Health Information

Guest post by Jennifer Jentsch, MLS, Project Manager, MedlinePlus Connect, National Library of Medicine

NLM is celebrating the 10th anniversary of MedlinePlus Connect, a free service that links electronic health records (EHRs), patient portals, and other health IT systems to relevant, authoritative, and up-to-date health information from NLM’s MedlinePlus health information resource and other NIH websites. A look back over the past 10 years highlights opportunities that came together to create this successful NLM resource.

Development of MedlinePlus Connect

We know that having access to information empowers people. When it comes to a person’s health, information is fundamental in helping people learn about their conditions, medications, and treatment options, and helps them make more informed decisions about their health. We also know that to facilitate this understanding, health care professionals need to point the people they treat to trusted, accurate health information that is easy to understand. Quality information is an essential component of quality health care.

With the release of the MedlinePlus and MedlinePlus en español websites in the late 1990s, NLM quickly became a trusted source of quality online health information for the public. A decade later, a new health information need began to emerge. Health care providers were rapidly transitioning from paper health records to EHRs. The EHR system itself became a new platform for the delivery of health education, where both patients and providers could easily access explanatory resources about a diagnosis, medication or medical test. The sharing of trusted health information between provider and patient was migrating to an entirely electronic, yet personalized, environment.

In these emerging EHR systems, NLM saw an opportunity to leverage the rich resources of MedlinePlus and serve the public in a new way.   

The idea became reality with the launch of MedlinePlus Connect in 2010. NLM used the expertise of staff in data science, medical code systems, health data standards, and information technology to build this innovative service. The team created an Application Programming Interface (API) to seamlessly bring the rich consumer health resources of the MedlinePlus and MedlinePlus en español websites directly into EHRs. Tens of thousands of pages about diseases and conditions, medications and lab tests were now accessible for use in a new way. 

How It Works

MedlinePlus Connect is a free web application and web service that does not require registration to use. It works by accepting specific requests from EHR systems in a customized HTTPS format and responds with links to relevant information.

In the course of patient care, health care professionals assign medical codes for particular diagnoses, tests, procedures, and medications to the health records of patients. MedlinePlus Connect uses these codes to provide patient-specific health information to the EHR system.

As part of NLM’s commitment to health data standards, MedlinePlus Connect uses standard medical code systems like SNOMED and LOINC, and adheres to the Infobutton standard. To facilitate the connection with EHRs, NLM staff create “mappings” (or associations) between MedlinePlus content and standard medical coding systems used in EHRs. Today, MedlinePlus Connect supports half a dozen major code systems for diagnoses, medications, procedures, and medical tests, including ICD-9-CM, ICD-10-CM, SNOMED, and RxNorm.

MedlinePlus Connect Today and into the Future

Since its launch, MedlinePlus Connect has been employed by a wide array of users, including large and small EHR systems, health care networks and organizations, hospital systems, and mobile applications. The API has grown significantly in usage, in content, and in code mappings. (See our timeline infographic for important developments over the past 10 years.)

See how MedlinePlus Connect has grown over the past 10 years.    Image credit: Brenna Cox

Today, MedlinePlus Connect provides a robust service that can easily respond to more than 171,000 medical codes with relevant health information.  In 2020, MedlinePlus Connect received 252 million code requests from external systems.

An exciting new initiative is the integration of consumer health information from other NIH Institutes and Centers (ICs). In 2018, MedlinePlus Connect piloted a collaboration with the National Institute of Diabetes and Digestive and Kidney Diseases. The success of this collaboration led to the participation of two additional NIH Institutes: the National Institute on Aging and the National Cancer Institute . NLM is working with other NIH ICs in this effort to expand the scope of content in MedlinePlus Connect.

The next major development will be the addition of Current Procedural Terminology (CPT®) codes from the American Medical Association to expand access to information about medical procedures.

As MedlinePlus Connect enters a new decade, we can’t help but reflect on how the goals behind the service remain very much the same as they were when this service launched:  to deliver health information to the public in new and innovative ways, to reduce barriers in information access, and to support quality health care everywhere.

Interested in learning how to implement MedlinePlus Connect?  Read our documentation and contact us with questions. Sign up for the MedlinePlus Connect email list to keep up with developments and exchange ideas with other users.

Jennifer Jentsch, MLS, joined NLM in 2001 and has supported a variety of NLM health information products including PubMed, PubMed Central, and MedlinePlus. Since 2014 she has served as Project Manager for MedlinePlus Connect.

Upcoming Training Opportunity: University-based Training for Research Careers in Biomedical Informatics and Data Science

Guest blog by Valerie Florance, PhD, Director of NLM’s Division of Extramural Programs

Explore the Training

NLM’s Extramural Programs Division is a principle source of NIH funding for research training in biomedical informatics, applying approaches in computer and information science to challenges in basic biomedical research, health care, and public health administration. NLM’s support fundamentally shapes the education, training, and advancement of biomedical informatics nationally. For decades, NLM has sponsored university-based training for predoctoral and postdoctoral fellows to prepare them for research careers. These programs support NLM’s long-term investment strategy to help influence and impact the field of biomedical informatics and data science.

Last October, NLM published NOT-LM-21-001 in the NIH Guide for Grants and Contracts to allow potential applicants sufficient time to develop meaningful collaborations and responsive projects. This program, a model among NIH training programs, advances training with big data in biomedical informatics and produces interdisciplinary, researchers that fully comprehend the challenges of knowledge representation, decision support, translational research, human-computer interaction, and social and organizational factors that influence effective adoption of health information technology in biomedical domains. This notice was the first step in a year-long process that will result in new 5-year grant awards that begin in July 2022. You’ll find the notice outlines the expected timetable for publishing the funding opportunity announcement, accepting applications, reviewing them and making awards.

The solicitation for new applications will be published in the NIH Guide for Grants and Contracts in March with applications due in May. For those interested in applying for an NLM training grant for the first time, we encourage a review of the previous solicitation to get a sense of the data and programmatic descriptions that are required for a training grant application.

Because issuance dates for the next competition are estimates, it is also helpful to subscribe to the weekly Table of Contents emails from the NIH Guide for Grants and Contracts. The extra benefit of this weekly mailing is that it lists all new funding issuances from NIH plus important notices about policy changes.

A Strong Foundation

NLM’s training programs offer graduate education and postdoctoral research experiences in a wide range of areas including health care informatics, translational bioinformatics, clinical research informatics, public health informatics, and biomedical data science. Each of these programs offer a combination of core curriculum and electives. In the current 5-year cycle, seven programs also offer special tracks in environmental exposure informatics supported by NIH’s National Institute of Environmental and Health Sciences.

A decades-old project, the university-based training initiatives is one of NLM’s signature grant programs. NLM’s training programs have produced many leaders in the field of biomedical informatics. Past trainees have taken positions in academia, industry, small businesses, health care organizations, and government. Currently, NLM supports 200 trainee positions at 16 universities around the United States and provides funding each year for up to 40 short-term trainee positions that are used to help recruit college graduates to our field by providing introductory training and research opportunities. To develop a sense of community among the trainees, NLM brings its trainees together each year, apart from those falling within a pandemic year, for an annual conference hosted at one of the university sites.

You can find a map with links to descriptions of the current programs here. The website also provides links to information about past annual conferences – check out past agendas to get a sense of the broad scope of science across the field of biomedical informatics.

Attendees comparing notes at NLM Informatics Training Conference 2017 in La Jolla, California

Did you take part in this training? What was your favorite thing about this experience? What advice would you give to current students? How can we make the program even better?

 Dr. Florance heads NLM’s Extramural Programs Division, which is responsible for the Library’s grant programs and coordinates NLM’s informatics training programs. 

Holiday Greetings from the NLM Director!

I consider myself an upbeat person and am most upbeat during the winter holiday season. I’ve always been drawn to this time of year – it’s cold, often snowy, and brings many traditions I love, including spiritual customs, family gatherings, fabulous food, and gift-giving. It also brings about an annual pause in the lives of many people, and an opportunity to celebrate the many holiday observances that take place across various cultures in the world.

This year I’m struck by the importance of light as a symbol across many religions and cultures, such as the Festival of Lights celebrated by Hindus, Jains, and Sikhs known as Diwali; the Jewish Festival of Lights known as Hanukkah, or Chanukah; the Christian tradition of Christmas; or the celebration of African and African American culture, known as Kwanzaa.

Light is almost a universal symbol.

Light represents hope, transcendence over darkness, and knowledge. We experience light through lamps, candles, in the flames of a fire, through the brilliance of the sun, and the twinkles of color that appear on holiday decorations. In some religious traditions, light represents spiritual power or guidance. In common parlance, light reflects joy and invites engagement. Light stands in a positive contrast to the short days and long nights of winter experienced in the Northern Hemisphere, where I’ve spent most of my life.

Light also serves as an indication of illumination – the increased clarity, insight and awareness about situations and ideas. NLM serves as an illuminating force in the world – bringing knowledge to bear to increase enlightenment and awareness about complex biomedical situations and ideas. I’ll bet you haven’t often connected the idea of holiday lights and NLM resources — bear with me — it really works!

Information alone – unread and unused – is not enough, just as the benefits of light are limited when the light is obstructed or not in view. This idea holds true for NLM resources too.  

As a leader in biomedical and health data science research and the world’s largest biomedical library, NLM’s research and information services are most valuable when they are readily available to those who need it. Thanks to our NLM team, we continue to be able to provide free and unencumbered access to information to people from around the world.

Individuals perceive light through a complex physiological and psychological process and their reaction to light builds on history and prior experiences. When NLM users discover new articles or preprints through our search process and read them, they do so against the backdrop of their own life experiences and knowledge – adding even more value to research, both new and old! Finally, one of the greatest things I love about light is that it can be experienced and perceived by many without being diminished. So too for our NLM resources that serve many without ever being exhausted!

This year, I am observing and celebrating the Christmas holiday and want to share the light of this holiday season with all of you, and particularly with my son, who is far away from me in Seattle. This season, many of us will be connecting with loved ones near and far through the light of a computer screen!

Certainly, the challenges of 2020 have made it ever so much more important to enjoy the spark that friends and family near and far provide. Please share your special views on light with each other and with the readers of this blog.

Happy holidays from ours to yours!