Director, National Library of Medicine

January 23, 2017

Dr. Patricia Brennan

Director, National Library of Medicine

Dear Dr. Brennan,

The Alliance for Nursing Informatics (ANI) advances nursing informatics leadership, practice, education, policy and research through a unified voice of nursing informatics organizations. ANI has reviewed the Request for Information (RFI) for the Strategic Plan for the National Library of Medicine (NLM).

We offer our comments as nursing stakeholdersaligned with the information requested for each of the 4 Planning Themes identified by the NLM. Please find each Planning Theme and information requested by NLM in bold and italics, followed by our response below.

Planning Theme 1: Role of NLM in advancing data science, open science, and biomedical informatics.NLM serves as the organizational leader and a major sponsor of research, development, training and workforce development in data science, information science, biomedical informatics, and health sciences librarianship, all of which facilitate open science. Understanding trends in data management, curation, knowledge representation, analysis technologies, communications infrastructure, and the semantics and importance of new classes of health-relevant data will be essential to the institution's success in these areas in the future.

• Identify what you consider an audacious goal in your area of interest – a challenge that may be daunting but would represent a huge leap forward were it to be achieved. Include input on the barriers to and benefits of achieving the goal.

An audacious and important goal is to provide continuing professional education for the healthcare workforce to achieve role-based informatics competencies, including nurses in all professional roles. To support this goal, we recommend that the NLM role includes serving as a digital library for all free, open-source informatics training courses that currently exist. In this role, the NLM could perform curation of course content to guide self-learning based on competency assessments.

• The most important thing NLM does in this area, from your perspective.

ANI commends the NLM’s support of nurses in the area of informatics training and workforce developmentencourages NLM to expand these important activities.

• Research areas that are most critical for NLM to conduct or support.

ANI supports two critical research areas for NLM to conduct or support:

1. Data-driven and evidence-based identification of informatics-related educational needs of the healthcare workforce.
2. Identification of best practices for data and information governance across healthcare organizations and settings to improve and support care coordination activities.

Planning Theme 2: Role of NLM in advancing biomedical discovery and translational science

NLM is a global resource that supports and catalyzes health-related scientific discovery and effective translation of new knowledge into practice. Integrated retrieval and analysis tools provide linkages that promote discovery across a wide variety of databases containing biomedical literature, genomic information, and other scientific and clinical data. Novel translational resources such as ClinicalTrials.gov accelerate accrual to clinical research studies and promote scientific integrity via publication of study designs and research results. Researcher access to new classes of data, such as electronic health records, is supporting discovery science. Both curiosity-driven and translational science are expected to continue to evolve rapidly over the coming decade.

• The most important thing NLM does in this area, from your perspective.

ANI wholeheartedly supports the NLM effort for improved ClinicalTrials.gov reporting and data and information sharing to promote scientific integrity and accelerated dissemination of results to practicing clinicians.

Planning Theme 3: Role of NLM in supporting the public's health: clinical systems, public health systems and services, and personal health

NLM's mission includes providing information to promote health and reduce the burden of suffering from disease worldwide. Healthcare organizations are undergoing dramatic changes in response to the need to demonstrate value, safety, and effectiveness. With its initiatives to distribute and promote adoption of health data standards, NLM has been influential in enabling interoperability of clinical systems and meaningful use of electronic health records. Factors such as behavioral and lifestyle characteristics, environmental exposures, and biomarkers of immune status are becoming more important. New technologies and communication tools are enabling individuals to reach goals for health promotion and disease prevention. Novel validated models for decision support are demanded by the expanded complexity of knowledge in all disciplines of human health and disease.

• Identify what you consider an audacious goal in your area of interest – a challenge that may be daunting but would represent a huge leap forward were it to be achieved. Include input on the barriers to and benefits of achieving the goal.

ANI believes that changing the culture within healthcare to recognize and support patients as owners and stewards of their own health data is a critical and audacious goal central to the mission of the NLM. Part of this important work is achieving a greater understanding of how nurses can and should support patients and families in owning their health data and in supporting patients, families, communities, populations, nurses, and other interprofessional team membersas full partners in shared decision-making within healthcare delivery.NLM’s continued standardized language and terminologies initiatives will need expansion to address inclusion of wellness, health, health promotion, and other associated concepts and metrics with such an evolution.

• The most important thing NLM does in this area, from your perspective.

The most important thing NLM does is promote adoption of health data standards.

• Research areas that are most critical for NLM to conduct or support.

A critical research area for the NLM to support is the promotion of new technology and communication tools to support patient-centered decision making, ownership, and sharing of data with a focus on health promotion and wellness.

• New data types or data collections anticipated over the next 10 years.

As nursing informatics stakeholders, we look forward to and anticipate a significant need for greater understanding of how to collect, store, curate, process, use and learn from patient-generated data, genomics data, and social determinants of health data over the next 10 years.

Planning Theme 4: Role of NLM in building collections to support discovery and health in the 21st century

NLM has the world's largest collection of published biomedical literature, with many items that are unavailable anywhere else. The NLM collections already extend far beyond traditional publications, whether in physical or digital format, to include unpublished manuscripts, images, video, sound recordings, web pages, and, especially, databases containing a wide variety and enormous quantities of digital data. The nature of scholarly publication and scientific discovery continue to evolve rapidly, with implications for what data and information NLM should collect and the methods to be used to acquire, archive, and disseminate new data, information and knowledge relevant to human health and disease.

• Identify what you consider an audacious goal in your area of interest – a challenge that may be daunting but would represent a huge leap forward were it to be achieved. Include input on the barriers to and benefits of achieving the goal.

ANI encouragesthe NLMto aspire to support all practicing nurses in delivering evidence-based care (particularly the bedside nurse and community nurses) by providing real-time, easily accessible, and intelligent semantic-based search functionality of healthcare publications and non-traditional data sources at the point of care.

• The most important thing NLM does in this area, from your perspective.

The NLM provides important public access to healthcare data beyond traditional publications.

• Research areas that are most critical for NLM to conduct or support.

Research areas critical to the NLM mission and vision include enabling the reuseand analytics of multiple non-traditional data sources by conducting and supporting research activities thatinvestigate methods for pooling heterogeneous data sources.

• New data types or data collections anticipated over the next 10 years.

Access to databases of health-related social media data and information, including patient online communities, will be particularly useful for several areas of nursing research related to health behaviors and the patient response. ANI supports NLM activities and research to enable public access and use of these new, emerging types of patient and publichealth data.

ANI appreciates the opportunity to contribute to the conversation onNLM’s next strategic plan to describe priority areas aligned with the NLM mission to provide information to promote health and reduce the burden of suffering from disease worldwide. We believe that thepriorities ANI has endorsed in this letter can have a significant impact on improving data and information access to enhancing health and wellness.

Sincerely,

Page 1 of 4

Charlotte Weaver, PhD, RN, MSPH, FHIMSS, FAAN

ANI Co-chair

E-mail:

Mary Beth Mitchell, MSN, RN, BC, CPHIMS

ANI Co-chair

Email: