1. Request for Information on NLM Barbara A. Rapp, Ph.D. Chief, Office of Planning and Analysis Office of Health Information Programs Development National Library of Medicine National Institutes of Health U.S. Department of Health and Human Services

2. HMD resources are marvelous DOCLINE has been absolutely essential The health services research literature is invaluable Most valuable: The National Network of Libraries of Medicine Keep up the good work HMD is indispensable Without a doubt, NCBI is the most valuable element of the NLM PubMed is an invaluable platform The WISER program is the most valuable I use the REMM site extensively Leadership in funding biomedical informatics research and innovation Informatics training programs should be expanded We can’t overstate the importance of the NLM resources I find ClinicalTrials.gov to be useful in many waysPubMed Central is great Databases such as MedlinePlus are extremely important for librarians and patrons Toxnet most valuable PubMed, including the MeSH system, is invaluable The extensive NLM collection fills a hugely important role ITK is invaluable

3. Request for Information: NLM Advisory Committee to the NIH Director Working Group on NLM RFI issued Feb 13–March 13, 2015 Input requested on 5 questions 649 respondents

4. RFI Questions 1- 4 Current NLM elements that are of the most, or least, value to... 1.the research community... 2.health professionals... 3.patients and the public... 4.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 be needed…

5. RFI Question 5 – “Future” 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.

6. Content of Responses Covered breadth of NLM More than 200 specific products, services, projects, features, programs named Contributed by the broad spectrum of communities we serve

7. Respondent Roles Librarian 38.7% Researcher 11.1% Emergency Personnel 9.4% Educator 7.4% Historian 7.6% Healthcare Professional 5.1% Environmental Science / Toxicology 5.2% Other 4.8% Unknown 3.7% Public Health 2.8% Advocate 2.9% Publisher 1.4% N=649 respondents

8. Institution Types University 24.3% Medical School 12.0% Hospital 11.9% Company 10.9% State / Local Government 9.2% Association 7.6% Federal Government* 5.4% K-12 4.0% Unknown 3.9% Public Library 2.6% Military* 2.0% NIH* 1.8% International 1.7% RML 1.5% Community College 0.3% N=649 respondents

9. Professional Associations Medical Library Association Association of Academic Health Science Libraries Association of American Medical Colleges American College of Medical Informatics Association of Research Libraries American Association for the History of Medicine

10. Number of Comments Submitted Q1: Value to Researchers 421 Q2: Value to Health Professionals 420 Q3: Value to Patients & General Public 377 Q4: Value to Librarians, Publishers, Developers 345 Q5: Future 335 N=649 RFI respondents

11. Value to Research Community PubMedHMDPMCNCBIClinicalTrialsMeSHDOCLINENN/LMUMLSTOXNET Value to Health Professionals PubMedWISERTOXNETPMCMedlinePlusClinicalTrialsNN/LMDOCLINEOpen AccessREMM Value to Patients & Public MedlinePlusPubMedClinicalTrialsNN/LMHMDPMCDB TrainingK-12 HouseholdProducts PM Health Value to Librarians, Publishers, Developers PubMedNN/LMDOCLINEPMCMeSHMedlinePlusDB TrainingClinicalTrialsHMDAssociates Top 10 mentions

12. Range of Comments Bibliographic Drug Information ClinicalTrials.gov Data Science/Sharing Standards/Vocabulary EHR / LHC Informatics Research Informatics Training Collections–Print, Digital Training: resource, librarian, NN/LM History of Medicine Consumer Health Env/Tox/Disaster Health Services Research APIs, E-utils, LinkOut NLM Overall

13. Product Suggestions Expand Advertise Improve a feature Add a feature Restore a feature Continue to support Augment content Make an app Collaborate Increase funding

14. Themes for Future Biomedical Informatics Big Data Clinical Genomics Clinical Data Analysis EHR Digital Publications Open Access Emergency Response

15. Themes for Future Biomedical Informatics Increase funding greatly Broad and deep portfolio Fundamental and applied Balance clinical, bio-, and public health informatics Expand training significantly Concentrate at NLM and/or Distribute broadly at NIH Big Data Repository hosting, linking Discovery index, data catalog Data and software citation Enforce data transparency Implement markup standards (partnerships) Data fraud protection tools Partner in standards development, best practices for storing and linking data Partner in support of data management plans

16. Themes for Future, cont’d Clinical Genomics Integrate NLM systems for real-time clinical use Clinical grade computing Infrastructure Centralized repository management service Clinical Data Analysis Support secondary analysis of clinical data Create central repository for de- identified primary data from clinical trials, observational studies Create online tools, viewers, and browsers to support navigation of large volumes of primary data Create common reporting standards for health related exposures (dietary intake, smoking status, exposure to pollutants) for meta-analysis, meta-synthesis, and creative secondary analysis

17. Themes for Future, cont’d EHR Continue collaboration with Office of the National Coordinator for Health Information Technology Continue leadership in health data standards, harmonization, adoption Continue current projects for vocabulary standards and value sets Collaborate/partner for new standards development Private sector role in developing new vocabulary standards and value sets New standard activity needed in: – Drug allergy classification – Adverse drug event reporting – Appropriate classification of biotechnology-derived pharmaceuticals EHR Create test bed EHR system Allow content providers to create plug- in applications to demonstrate added value of relevant data at point of care. Host a database for protected EHR data Create central, de-identified linked patient databases for research Partner with outside groups that have high-performance computing capabilities to analyze data for patterns Develop and fund clinical decision support systems integrated with EHR

18. Themes for Future, cont’d Digital Publications Retain print collections Digitize as much as possible Web archiving of current content Data acquisition projects for historical (pre 1920) medical data and records 3-D scanning of large anatomical collections with relevance for modern research Open Access Strong pleas for greater open access, free full text, affiliation routes Facilitate and clarify links to full text across systems Publisher pleas for protection, use measures, linking to their sites Partnering role for data sharing policies Partnering role in author ID and value added, post-publication features

19. Themes for Future, cont’d Emergency Response – Formalize a model for national use of social media – Support for rural areas – develop free online certification for training in chemical safety – Develop infectious disease service (to complement REMM and CHEMM)

20. In Summary Engaged user communities who are invested in the services and research we support Thoughtful input relevant across NLM Product teams looking at specific feedback and suggestions Suggestions for future direction will contribute to developing program priorities Continued discussion with Board as strategic planning goes forward

21. Acknowledgments Dana Casciotti, Ph.D., OHIPD Maria Collins, Library Operations Mary Ann Leonard, OCPL Kathel Dunn, Ph.D., Library Operations Becky Baltich-Nelson, Associate Fellow Loan Nguyen, Associate Fellow Tyler Nix, Associate Fellow