NIH Request for Information Yields Important Public Input on Value of NLM Products and Services

How is the National Library of Medicine, the world’s largest biomedical library, viewed by its users and stakeholders? Which programs and services do they consider most important? What is NLM’s value to them, personally and professionally?

The National Library of Medicine in winter, after an ice storm coated the landscape in white.

The US National Library of Medicine

A researcher himself, NIH Director Francis Collins, MD, was interested in establishing several mechanisms to find out. In January of 2015, he formed a working group of the Advisory Committee to the NIH Director (ACD) for the purpose of reviewing the programs of the NLM and making recommendations for a vision for the library that will ensure its continued role as an international leader in biomedical and health information. In carrying out its charge, the working group issued a Request for Information (RFI) soliciting public input regarding NLM. The RFI was active from February 13 to March 13, 2015 and requested comments on the following five items:

  • Current NLM elements that are of the most, or least, value to the research community (including biomedical, clinical, behavioral, health services, public health, and historical researchers) and future capabilities that will be needed to support evolving scientific and technological activities and needs.
  • Current NLM elements that are of the most, or least, value to health professionals (e.g., those working in health care, emergency response, toxicology, environmental health, and public health) and future capabilities that will be needed to enable health professionals to integrate data and knowledge from biomedical research into effective practice.
  • Current NLM elements that are of most, or least, value to patients and the public (including students, teachers, and the media) and future capabilities that will be needed to ensure a trusted source for rapid dissemination of health knowledge into the public domain.
  • Current NLM elements that are of most, or least, value to other libraries, publishers, organizations, companies, and individuals who use NLM data, software tools, and systems in developing and providing value-added or complementary services and products, and future capabilities that would facilitate the development of products and services that make use of NLM resources.
  • How NLM could be better positioned to help address the broader and growing challenges associated with:
    • biomedical informatics, “big data,” and data science;
    • electronic health records;
    • digital publications; or
    • other emerging challenges/elements warranting special consideration.

NLM Board members helped solicit public comments in response to the RFI. In all, there were 650 respondents.

Dr. Barbara Rapp headshot

Dr. Barbara Rapp

At NLM’s September 17, 2015 Board of Regents meeting, Dr. Barbara Rapp, Chief, Office of Planning and Analysis, summarized the responses to the NIH RFI. She found that comments were submitted from across the broad range of NLM users, including medical librarians; researchers in biomedicine, biomedical informatics and computational biology; clinical, public health, and emergency response practitioners; historians; health information technology developers; journal publishers; and educators.

In addition to the many comments expressing general praise and appreciation for NLM’s information resources, services, research support, and training, respondents contributed numerous remarks about specific programs. Comments cited the importance of such resources as PubMed, PubMed Central, NCBI genomic databases, TOXNET, WISER, DOCLINE, modern and historical collections, MeSH, and MedlinePlus, and also offered suggestions for improvement. Other comments expressed strong support for continued and expanded programs in areas such as research and training in biomedical informatics, public access to literature and data, digitization of collections, health data standards, data and text mining software tools, electronic medical resources, and outreach to enhance awareness of NLM and its resources.

“Overall,” said Dr. Rapp, “the responses to the RFI represent substantive and thoughtful contributions that will be important in developing priorities for future action.”

Rapp added, “For value to the researcher, PubMed topped the list. But in general, people were unaware of many NLM resources.”

The range of responses, noted Rapp, generally fell into three categories: expand, continue to support, or promote a given product, service, or resource. She offered a handful of specific examples.

Comments on biomedical informatics focused on supporting research and training the workforce. Recommendations to increase funding were plentiful, with at least one person using the phrase “grossly underfunded” to characterize the current situation. Other remarks emphasized a balanced research portfolio that is simultaneously broad and deep, fundamental and applied, and inclusive of both clinical and public health informatics. Some suggested making NLM the home for all NIH informatics research.

With regard to big data, comments stressed building and hosting repositories, enforcing data transparency, implementing standards, developing protections against fraud, and requiring data management plans. Many comments underscored the need for the secondary analysis of clinical data. To support that, respondents suggested creating a central repository of primary data, developing online navigation and viewing tools, and creating common reporting standards for various forms of health-related data as an important prerequisite for meta-analysis.

There were many comments regarding vocabulary and other standards related to electronic health records, praising NLM’s leadership but noting continuing great need in this area. Specific examples included drug allergy, adverse drug effects, and biotechnology-derived pharmaceuticals. The words “collaborate” and “partner” also figured strongly for future development. With a “bridge to knowledge” viewed as important for clinical informatics, commenters highlighted the need to fund decision support systems that would be integrated with electronic health records.

Respondents frequently urged NLM to retain its print collections and to digitize as much as possible from the modern and historical collections. Many also suggested that the History of Medicine Division take on large-scale acquisitions for pre-1920 medical records and 3D scanning projects for human anatomical collections.

Support was strong throughout for continuing and expanding open access to free full-text articles for all. There were requests to facilitate access to public health workers, school nurses, and unaffiliated health professionals, and also recommendations to make links to full-text articles more seamless.

On the information provider side, commenters raised the issue of roles in the publishing and article-access process. Publishers raised issues of copyright, access to use measures, linking to the full-text articles, and taking a collaborative approach to the data sharing policies.

Support for NLM’s toxicology emergency response and disaster-related resources was strong. Respondents noted the importance of social media in times of disaster and encouraged NLM to work with the disaster preparedness community to set up a model for national use of social media, with roles and responsibilities assigned. A suggestion was made to develop an online certification program to equip people with the knowledge to respond to safety incidents in rural areas, too. Finally the need to develop an infectious disease information service similar to those for radiation and chemical events was described.

Dr. Rapp concluded, “The responses to this RFI certainly showed that we have a highly engaged user community. They provided thoughtful, useful input with relevance across NLM.”

Related Information
Summary of Public Responses to NIH RFI [PPT | 209 KB]
Presented by Dr. Barbara Rapp to the NLM Board of Regents on September 17, 2015
Includes presentation notes.

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