NIH Draft Strategic Plan for Data Science: Suggestions for Optimizing Value

Guest post by Dr. William Hersh, professor and chair of the Department of Medical Informatics and Clinical Epidemiology, School of Medicine, Oregon Health & Science University.

Earlier this year, the National Institutes of Health (NIH) issued a Request for Information (RFI) soliciting input for their draft Strategic Plan for Data Science. As I did for the National Library of Medicine’s (NLM) RFI concerning next-generation data science challenges in health and biomedicine, I shared my comments on the data science plan through both the formal submission mechanism and my blog. (See also my blog comments on the NLM RFI.) I appreciate being asked to update my comments on the draft NIH data science plan in this guest post.

The draft NIH data science plan is a well-motivated and well-written overview of the path NIH should follow to ensure that the value of data science is leveraged to maximize its benefit to biomedical research and human health. The goals of connecting all NIH and other relevant data, modernizing the ecosystem, developing tools and the workforce skills to use it, and making it sustainable are all important and articulated well in the draft plan.

However, collecting and analyzing the data, along with building tools and training the workforce to use the data, are not enough. Three additional aspects not adequately addressed in the draft are critical to achieving the value of data science in biomedical research.

The first of these is the establishment of a research agenda around data science itself. We still do not understand all the best practices and other nuances around the optimal use of data science in biomedical research and human health. Questions remain regarding how best to standardize data for use and re-use. What standards are needed for best use of data? Where are the gaps in our current standards that we can address to improve the use of data in biomedical research, especially data not originally collected for research purposes (such as clinical data from electronic health records and patient data from wearables, sensors, or that is directly entered)?

We must also research more extensively the human factors around data use. How do we organize workflows for optimal input, extraction, and utilization of data? What are the best human-computer interfaces for such work? How do we balance personal privacy and security against the public good of learning from such data? What ethical issues must be addressed?

The second inadequately addressed aspect concerns the workforce for data science. While the draft properly notes the critical need to train specialists in data science, it does not explicitly mention the discipline that has been at the forefront of “data science” before the term came into widespread use, namely, biomedical informatics. NLM has helped train a wide spectrum of those who work in data science, from the specialists who carry out the direct work to the applied professionals who work with researchers, the public, and other implementers. NIH should acknowledge and leverage this workforce that will analyze and apply the results of data science work. The large number of biomedical (and related flavors of) informatics programs should expand their established role in translating data science from research to practice.

The final underspecified aspect concerns the organizational home for data science within NIH. Many traditional NLM grantees, including this author, have been funded under the NIH Big Data to Knowledge (BD2K) program launched several years ago. The newly released NLM Strategic Plan includes a focus on data science and goes beyond some of the limitations of the draft NIH data science plan described above, making the NLM the logical home for data science within NIH.

By addressing these concerns, the NIH data science plan can make an important contribution to realizing the potential for data science in improving human health as well as preventing and treating disease.

headshot of Dr. Hersh William Hersh, MD, FACMI, serves as professor and chair of the Department of Medical Informatics & Clinical Epidemiology, School of Medicine, Oregon Health & Science University. His current work is focused on the workforce needed to implement health information technology, especially in clinical settings, and he is active in clinical and translational research informatics.

Looking Back on 50 Years

Guest post by George Franklin, an information technology specialist in NLM’s Office of Computer and Communications Systems

I started my government career at the National Library of Medicine in July 1967. It was a time of paper, pens and pencils, typewriters—both manual and electric—and plenty of carbon paper. The card catalog that I used many times no longer exists.

A time came when you had to give up your typewriter and carbon paper for this invention called a computer, and that frightened many employees. Then came the world wide web, email, networking, and all this new technology that was supposed to make our life and work better and more efficient. (It keeps getting better or worse, depending on who you talk to.)

My career has been very enriching and exciting. My first job at NLM was in the mail room, where I started as a mail clerk. Currently I am an information technology specialist assigned to the Desktop Services Section of the Office of Computer and Communications Systems. In between, I held five other positions at NLM. Through all seven jobs, plus four years military, I have been fortunate to work with a lot of talented and special colleagues.

I have always had a passion for working with young people of all ages, but I think my greatest achievement has been going out into the community to do outreach, whether at health fairs, school functions (like career days or other special programs), Native American powwows, or professional conferences. I really enjoy talking with people about the important work we do at NLM and at NIH.

It’s that kind of engagement that keeps me going. As a result, fifty years later, I’m still here, enjoying the work I do at NLM and just maybe helping to make a difference.

headshot of George FranklinGeorge Franklin is an information technology specialist in NLM’s Office of Computer and Communications Systems. He will be among the honorees at the HHS Departmental Awards Ceremony Wednesday, May 9, for his years of service.

Photo credit (typewriter, top): Carl Ha [Wikimedia (CC BY-SA 4.0)]

National Public Health Week 2018: Changing Our Future Together

Guest post by Lisa Lang, head of NLM’s National Information Center on Health Services Research and Health Care Technology

The secret is out: The National Library of Medicine supports National Public Health Week every day, all year.

We have been committed to supporting the public’s health since our establishment in 1836. From its start as the library of the US. Army Surgeon General, the statutory mission of NLM has been “…to assist with the advancement of medical and related sciences and to aid in the dissemination and exchange of scientific and other information important to the progress of medicine and to the public health.”

Today, we look toward implementing our new strategic plan and a vision of NLM as a platform for biomedical discovery and data-powered health.  In that vision, we assure progress for all by working closely with our partners and colleagues in biomedical research, medicine, and public health—living out this year’s message for National Public Health Week, “Changing our future together.”

A year ago or so, NLM Director Patricia Flatley Brennan sat down for an interview with The Nation’s Health, a publication of the American Public Health Association, and enthusiastically described NLM’s many resources [PDF] and activities that support the work of public health. Those resources are free and available to all 24/7, every day of the year.  Even the most specialized resources can be accessed by the general public.

But today, during National Public Health Week, we take the opportunity to highlight the many ways NLM can help those in public health meet their charge to change the future.

This year, this annual event is focusing on such critical public health issues as access to effective behavioral health services; communicable diseases; environmental health; injury and violence; and ensuring the right to health. It’s a bold agenda, one we can only achieve by working together.

And NLM is doing its part.

For example, looking at just one of this week’s themes, Injury and Violence Prevention, we can find information coming out of NLM that addresses an array of needs:

  • Seeking current, high-quality general literature, but don’t know where to start?
    Dip into NICHSR ONESearch to simultaneously search across four key resources for evidence-based public health: the webportals for the public health and health services research communities and two unique health services research databases.
  • Looking for the latest research in the journal literature?
    Run one of the pre-set PubMed queries for the Leading Health Indicators addressing injury and violence. (Leading Health Indicators are a subset of the national public health goals, “HealthyPeople 2020,” that track our 10-year progress in achieving these key objectives.)
  • Hunting for tools, statistics, data sets, research reports, or PubMed queries?
    Check out the Health Services Research topic page on domestic violence, which covers intimate partner violence, sexual coercion, and child or elder abuse, or review the list of resources addressing the intersection of domestic violence and HIV/AIDS.
  • Trying to cope with disasters, violence, or traumatic events?
    Consult the quality sites NLM’s Disaster Information Management Research Center has pulled together to help both the public and specialists, including first responders, health care providers, journalists, and teachers, deal with—or help others deal with—the stress and emotional struggles that follow such incidents.
  • Looking for clinical trials or research projects related to domestic violence?
    Comb through the actively recruiting trials registered with ClinicalTrials.gov or the recently funded health services research projects in HSRProj (Health Services Research Projects-in-Progress).
  • Helping consumers or patients improve their understanding of violence as a health topic?
    Head over to MedlinePlus for straightforward, consumer-level information about injuries, violence, and abuse.
  • Hoping to learn from the past to help prevent future violence?
    Explore NLM’s recent exhibition Confronting Violence: Improving Women’s Lives.

And that’s not the end of it.

Our National Network of Libraries of Medicine—more than 6,000 member libraries strong—is available to assist the public and public health professionals with access to quality health information. And NLM supports terminologies and tools that foster the collection of high-quality data for research and practice.

We are all in this together. NLM and public health: working together today and for the future.

casual headshot of Lisa LangGuest blogger Lisa Lang is Assistant Director for Health Services Research Information and also Head of NLM’s National Information Center on Health Services Research and Health Care Technology (NICHSR).

NLM Celebrates Fair Use

Guest post by NLM Associate Fellow Gabrielle Barr and NLM Copyright Group co-chairs Christie Moffatt and Rebecca Goodwin.

It’s Fair Use Week 2018, an annual event coordinated by the Association for Research Libraries (ARL) to celebrate the opportunities of fair use, including the many ways it supports biomedical research and the work we do at here at NLM.

Fair use is a legal doctrine that asserts the right to use materials under copyright in a limited manner without the copyright holder first granting permission. In practice, fair use is a balance between the rights of copyright holders and the rights of researchers, authors, educators, students, artists, and others, as we work as a society to promote science, education, and the arts.

Section 107 of the US Copyright Act provides the details of fair use, but the University of Virginia Library nicely summed it up in only seven words: “Use fairly. Not too much. Have reasons.”

Infographic: Fair Use Promotes the Creation of New Knowledge
Click image to view full infographic.

Libraries regularly champion fair use because of the way it supports research and education, but also because it enables libraries to fulfill their primary mission of providing and preserving information.

The same holds true here at NLM.

NLM’s fair use policies, based on ARL’s best practices, support access to library resources, encourage teaching and learning, allow preserving at-risk materials and collecting web-based content for future scholarship, and facilitate new modes of computational research and data-mining.

From digitizing content to building institutional repositories to creating physical and digital exhibitions, NLM applies fair use in a variety of ways. We maintain the NLM Digital Collections to provide access to historical books, photographs, videos, manuscripts, and maps. We collect web-based “born digital” content documenting major global health events such as the 2014 Ebola Outbreak. We digitize films for the History of Medicine Division’s (HMD) collection of Medical Movies on the Web, showcase materials in physical and online exhibitions, and promote our collections via blogs such as HMD’s Circulating Now. We incorporate copyrighted content into online courses and tutorials for NLM systems such as MEDLINE®, PubMed®, the Unified Medical Language System®, and the Value Set Authority Center. And we include stubs of proprietary clinical assessment instruments in the NIH Common Data Elements Repository to help researchers standardize clinical data.

Now NLM is considering how fair use can accommodate our evolving needs in the technology-rich and data-driven future.

The Library strongly supports the FAIR Data Principles, which affirm that data and other digital objects representing the products and processes of modern biomedical science are Findable, Accessible, Interoperable, and Reusable (FAIR). And we rely increasingly on algorithms, APIs, computer software, searchable databases, and search engines that enable data mining for intellectual purposes.

While fair use can ensure access to and use of these tools and data, recent federal court decisions indicate the intersection of copyright law with APIs and computer software remain part of the fair use frontier. Each new ruling has the potential to redefine current practice and requirements.

In this time of shifting sand, it’s no surprise that ARL’s forthcoming Code of Best Practices in Fair Use for Software Preservation (expected this fall) involves extensive research and interviews with software preservation experts and other stakeholders. Their ability to articulate the complex issues related to software and fair use could significantly impact libraries’ future work preserving today’s digital record.

In the meantime, NLM is forging ahead, applying fair use to advance medical education, biomedical research and discovery, and data-powered health.

We’d love to hear from other institutions on how you employ fair use and the steps you take to balance the rights of copyright holders with those of researchers, educators, and artists. Comment below or drop a note to the NLM Copyright Group.


casual headshot of Gabrielle Barr

Gabrielle Barr, MSI, is an NLM Associate Fellow. Before coming to NLM, she worked in the special collections of Norfolk Public Library and as a project assistant for the Health Sciences Library at the University of North Carolina at Chapel Hill. She received her master of science in information and a certificate in science, technology, and society from the University of Michigan in 2015.

 

casual headshot of Christie Moffatt

Christie Moffatt, MLS, serves as co-chair of the NLM Copyright Group, manager of the Digital Manuscripts Program in the History of Medicine Division, and chair of the NLM Web Collecting and Archiving Working Group. She earned her master’s degree in library science at the University of North Carolina at Chapel Hill, with a concentration in archives and manuscripts.

 

headshot of Rebecca Goodwin

Rebecca Goodwin, JD, serves as co-chair of the NLM Copyright Group and as a data science specialist in the Office of Health Information Programs Development. Previously, she served as special assistant to the director of the Lister Hill National Center for Biomedical Communications. She came to NIH in 2007 as a Presidential Management Fellow after earning her JD from the University of Florida Levin College of Law.

Education, Health, and Basketball

Guest post by David L. Nash, NLM’s Education and Outreach Liaison.

A few weeks ago, in observance of African American History Month, five former Harlem Globetrotters spoke at a program in Silver Spring, Maryland associated with a screening of the documentary “The Game Changers: How the Harlem Globetrotters Battled Racism.”

Following the short documentary and a brief ball-handling demonstration, we sat down to discuss our current careers and how we each got to where we are.

Those participating were:

  • David Naves of Bowie, Maryland, currently an engineer at NASA Goddard Space Flight Center;
  • Bobby Hunter from Harlem, New York, a businessman and fundraiser for charitable events, cancer awareness, and community basketball;
  • Larry Rivers from Atlanta, Georgia, who directs an organization that provides clothing, housing, career opportunities, and other services to temporarily disadvantaged people in the greater Atlanta area;
  • Charles Smith of Baltimore, Maryland, the president of a non-profit that provides a haven for urban youth to learn and enjoy sports; and
  • me, David L. Nash, NLM’s Education and Outreach Liaison.
David Nash slam dunks as a Harlem Globetrotter in the early 1970s
David Nash in action as a Harlem Globetrotter.

As we each shared our journeys from basketball to the boardroom, we focused on messages of health and education, driving home the idea that education is the key that unlocks the door to whatever you want to be.

I spoke about my experiences as a colon cancer survivor, emphasizing the need for early screening and regular doctor’s visits. And I noted the importance of family history as a risk factor for colon cancer.

I also gave out copies of NIH Medline Plus magazine featuring such health topics as cancer, diabetes, and asthma.

The crowd numbered well over 600 people, about double what we expected, with many of the adults bringing along their children and grandchildren. They were receptive and attentive.

Those in attendance appreciated the focus on education and wellness, and I enjoyed working with people of color to improve their understanding of important health information.

casual headshot of David NashDavid L. Nash serves as the Education and Outreach Liaison at the National Library of Medicine. After finishing his collegiate basketball career at the University of Kansas, he was drafted by the Chicago Bulls in the 1969 NBA Draft and played with the Harlem Globetrotters from 1970-72. He has worked at NLM since 1990.