WEBVTT
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- [Maryann] Hello and welcome
to NCSBN's Scientific Symposium.
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I'm Maryann Alexander,
Chief Officer of Nursing Regulation at NCSBN.
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The studies being presented today were
conducted both by NCSBN's internal research staff,
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and external scientists funded through NCSBN's
Center for Regulatory Excellence grant program.
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The grant program awards over $1 million annually for
studies that advance the science of nursing regulation.
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The data from these studies are used to
make nursing regulatory and policy decisions,
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develop national guidelines for nursing practice and
education, develop important changes to nurse practice
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acts and regulations.
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We want to thank all the researchers and grantees
for their important contributions to nursing science
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and a special thank you for those
presenting at this year's Scientific Symposium.
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One of NCSBN's researchers was Jennifer Hayden.
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She was a young talented scientist
that was the principal investigator
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for NCSBN's National Simulation Study.
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This study changed the way simulation is
incorporated into the pre-licensure nursing curriculum
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around the world.
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Unfortunately, almost upon completion of the
study, Jennifer passed away from breast cancer.
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Because of her important contributions to NCSBN
and to nursing science and policy, we have named our
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Scientific Symposium keynote address in her memory.
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And now it is my pleasure to introduce to
you the Jennifer Hayden keynote speaker.
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This year, we are honored to have
with us Dr. Patricia Flatley Brennan.
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Dr. Brennan is the Director of the
National Library of Medicine at NIH.
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She is the first woman and the first nurse
to be named to this prestigious position.
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Prior to this she was the Lillian L. Moehlman
Bascom Professor at the School of Nursing
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and College of Engineering
at the University of Wisconsin in Madison.
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Currently, Dr. Brennan is working on the delivery
of health information in new ways that are centered
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around the patient experience.
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Her laboratory develops interactive virtual
reality experiences to better characterize patients
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with complex chronic conditions such as diabetes
and heart failure, and a context in which they live.
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These simulations have several purposes,
including enabling patients to rehearse
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problem-solving behaviors,
to help improve their health outcomes,
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and disease management skills, inspiring
design of innovative home care technologies,
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and improving understanding of the sensory
behavior and cognitive processes that shape self-care.
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Dr. Brennan was on the faculty
at Case Western for 10 years
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and for 20 years at the
University of Wisconsin in Madison.
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She also is proudly the mother of
a 20-year-old son named Connor.
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Thank you, and please join me in welcoming
her to NCSBN's Scientific Symposium.
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- [Dr. Brennan] Good morning.
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I'm delighted to be here and quite honored
to be the Jennifer Hayden speaker today.
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I'm bringing you ideas about open science and the
way nursing and the National Library of Medicine
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can work together.
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We will be, at this next 40 minutes,
having presentations and...
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Excuse me, I'm not seeing my slides.
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We'll be having presentations and conversations.
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This is an audience participation activity and we'll be
here together with you to discuss the different ways
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that the NLM can help your
scholars shape the public discourse.
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There are three objectives for the session today.
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First, to recognize the role of the National Library
of Medicine in supporting the scientific responses
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to health challenges.
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Second, to critically appraise the contribution
of the NLM's offerings of bibliographic and full-text
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literature databases, biomedical databases,
and repositories such as clinicaltrials.gov
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in support of nursing science.
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And, finally, to devise pathways for public
discourse that enhance the impact of one's science.
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Now, I recognize this is quite a large audience and
quite a mixed audience so you may have different goals
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for what you would like to get out of my session.
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We are going to be having audience engagement
throughout the entire session and we'll begin now
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with the first poll.
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If you go to your screen, to the right-hand side,
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you should see a poll that
lists these three objectives.
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Please select the one that is most important to you.
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So, actually, interestingly enough,
we're sort of evenly divided.
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Lots of interest in what the National Library of
Medicine does, about 35% of the responders.
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Not as much interest in recognizing the role
the library has played in supporting science
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but a lot of interest in devising pathways
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for enhancing the public health
contribution of one science.
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To begin understanding the role of the National
Library of Medicine and what our contributions are
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to nurses cholars and how they can shape the
public discourse, please watch this short video.
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♪ [music] ♪
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Over the next 40 minutes, you're going to learn
a lot about the National Library of Medicine.
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And you're probably going to come away with
the idea that it's not your mother's library anymore.
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We're very excited to be part of the National
Institutes of Health, which we joined in 1966.
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However, our library is 180 years old.
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Right now, in the 21st century,
we focus on critical areas,
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critical infrastructure for knowledge and policy.
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We facilitate open access to the literature.
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We have resources such as PubMed
Central, our full-text literature repository,
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the CORD-19 recollection which has over 120,000
COVID-specific articles that had been made open
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to the public for machine learning as well as for
general perusing during this terrible pandemic,
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and PubMed, the bibliographic
citation database that we have.
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We also conduct and support research in computational
biology and computational health sciences.
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And we implement and establish training programs.
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We have training programs around the country,
16 programs in pre and post-doctoral training
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in biomedical informatics.
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We host hundreds of training programs
throughout the year for clinicians, patients,
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and librarians to better understand data science
and the resources of the National Library of Medicine.
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And we focus on informing policy.
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Now, as a federal body, we can't make
policy but we do provide the educational
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and informational resources to shape policy around
open data, research integrity, information access,
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and research accountability.
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Our focus today is on open
science and public accountability.
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And the phrase that comes up quite often within
open science concepts is the idea of open access.
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Now nurses, particularly nurses in practice who
graduated from their programs that have been richly
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supported by libraries suddenly find that
they can't always get access to the journals
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they're used to getting access to.
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The concept of open access means bringing
the literature in the open to all who may need it.
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We're going to have a brief poll now to talk a little
bit more about specifically what does it mean
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for the library to open access to literature and data?
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There's a new poll that's upped just now.
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Please respond.
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I'll try to give it a little more time this time
so that everyone gets a chance to respond.
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What is open access?
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Not everyone will know the answer to this.
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Don't be concerned.
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We want to make sure we start
off at the same point, though.
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There's a new poll that's upped just now.
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Please respond.
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So please respond.
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Open access, 42% of you got this correct.
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It's a set of principles and a range of
practices through which research outputs
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including journal articles,
but not only journal articles,
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are distributed online, free of
cost, or other access barriers.
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Now often, open access is thought of as the
publishers making a decision to remove the paywalls.
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And in fact, very often,
that is a critical piece of open access,
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that is publisher's charge through subscription or
through other mechanisms to get access to journals.
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But generally, from the perspective of the library,
the open access is a partnership that allows for access
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to information generated by researchers
supported by research activities and communicated
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through many mechanisms, including publications,
journal repositories, and journal resources.
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The National Library of Medicine
is building the 21st Century Collection.
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The 21st Century Collection
has three key responsibilities.
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First and foremost, we preserve.
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We preserve materials that are
available for the centuries to use.
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You might be surprised to know that in our library,
we house 10th-century manuscripts from China
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that have helped us understand some of the
basics of neuropathic and plant-based interventions.
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But increasingly, libraries are becoming electronic.
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And so we connect to other resources.
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We connect to the publishers, we connect to
different sources of information, data repositories.
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In the future, discovery in
the moment will become important.
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What is the answer to the question
that you haven't yet thought of?
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Many of our resources are now connected
because we create elaborate interconnections
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through search strategies, but in the future,
we have a need to think about and anticipate
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the information needs as they unfold.
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Now, if you look across the bottom of the
screen, our primary substrate for libraries has
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always been literature.
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But also I want you to think about that globe in
the center, an interconnected set of literature, data,
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other products of research, code,
pipelines that may be of value to document
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and show the rigor and reproducibility of our work.
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And of course, increasingly, data are important.
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Now, the National Library of Medicine has two key
resources that are most familiar to the general public
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and to nurses.
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First is PubMed, a search engine that accesses the
MEDLINE databases of reference, citations to articles
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in PubMed Central and some other related materials.
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We have over 30 million citations in PubMed.
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PubMed Central is a free digital repository that
archives publicly accessible full scholarly articles
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and serves as the public
archive for the NIH Public Policy.
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and for many other federal institutions,
including, for example, the Department of Agriculture.
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We have these resources available
24 hours a day, 7 days a week.
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But during this period of time, with the
tremendous public health emergency we have going on,
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we established the COVID-19 resource and
began making available from first with a partnership
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of 50 publishers, over 95,000 articles that
were made accessible and machine-accessible.
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This allowed for increasing the discovery process,
identifying relationships between various medic drugs
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that are existing in use, and new
possible targets for the COVID pandemic.
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This partnership required that we work closely with
the publishers and the Office of Science, Technology,
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and Policy to remove the legal and
financial barriers to accessing this information.
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I'll be glad to talk about that more in the question
and answer session if you have some interest here.
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In addition to PubMed Central, we're partnering
with the Allen Institute to build the CORD-19 data set.
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This has provided a challenge base for other
investigators, for individuals with clever ideas,
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to be able to mine and extract this information.
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The concept of preprints, that is publishing
a manuscript prior to a journal review,
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is getting greater hold in many
disciplines, including the Health Sciences.
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The NIH began accepting preprints as a credible
evidence of progress towards research goals
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about two years ago.
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Starting in the spring of this year, in June,
the NLM launched the preprint pilot,
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where we now are making preprints discoverable
through PubMed Central and through PubMed.
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We're focusing at this point only
on the COVID-19 articles, related articles.
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But what this is allowing is the literature now,
before it has gone through peer review, can be
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quickly accessible to researchers.
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Of course, this requires that we be
sure that people understand our brand,
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and make sure that they don't confuse a preprint
with an actual archive article that's been reviewed.
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So we use a lot of banner headings and
electronic indicators to identify and differentiate
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what is a preprint from what is an actual article.
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We are only doing this for NIH-funded research
because we know we have a trusted brand there.
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Improving access to the research literature
is a critical, critical requirement of the library.
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As I indicated earlier,
we have over 30 million citations.
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Two and a half million users come every day to use
these resources, and conduct millions and millions
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of searches throughout the month.
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Now, what this means if we have 30 million resources,
30 million searches, we have too much literature
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for you to read all at once.
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And we know also that an individual who conducts a
PubMed search often gets pages and pages of citations.
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We've been working, over the last couple of years,
to integrate artificial intelligence solutions
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to make sure it's possible to get access
to the most relevant literature.
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We've developed something that
we call the best match process
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using a learning-to-rank
artificial intelligence scheme.
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So when your query comes in at point number one,
we translate it by mapping it to known vocabularies
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and terminology, and extract from our
30 million citations what might be the most likely
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top hits for you.
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But this still may be too many pages for you,
to many papers for you to review efficiently.
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So then we apply this artificial
intelligence learning-to-rank algorithm,
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which uses thousands of features.
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How often has this article been cited?
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What else has been cited along with this article?
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How recent is this article?
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And then we return to the individual,
return to the searcher what we call the best match.
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This differentiates from our previous approach
where we used to provide our resources in a reverse
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chronological order, that is most
recent first, and you can still get that.
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But what we're finding is by using our AI
mechanisms, we're able to get information
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into people's hands faster.
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What it looks like on the screen
is you see in front of you.
00:18:39.386 --> 00:18:44.064 position:50% align:middle
In the right-hand side, in the green box, you know,
you can select either Best match or Most recent.
00:18:44.064 --> 00:18:49.145 position:50% align:middle
And when you select the Best Match,
a pop-up box appears that gives you...
00:18:49.145 --> 00:18:53.624 position:50% align:middle
and identifies for you the best
citations you could possibly get.
00:18:53.624 --> 00:18:57.554 position:50% align:middle
We're continuing to improve this both
by understanding how much click-through,
00:18:57.554 --> 00:19:00.438 position:50% align:middle
how much do people actually
read the citations we provide,
00:19:00.438 --> 00:19:04.766 position:50% align:middle
and also by getting responses and feedback
from our stakeholders around the world.
00:19:04.766 --> 00:19:10.235 position:50% align:middle
This best match algorithm, according to our
users, does produce better PubMed searches.
00:19:10.235 --> 00:19:15.290 position:50% align:middle
But importantly, what it means for our researcher
is that your work now is not going to be buried
00:19:15.290 --> 00:19:16.375 position:50% align:middle
on page 30.
00:19:16.375 --> 00:19:18.920 position:50% align:middle
It may be on page 1 of the citations.
00:19:18.920 --> 00:19:25.566 position:50% align:middle
And since over 80% of the people who use
the PubMed resource only go to the first page
00:19:25.566 --> 00:19:29.431 position:50% align:middle
and they don't go beyond that, it's great
to get things pushed up front quicker.
00:19:29.431 --> 00:19:37.654 position:50% align:middle
We envision a world where the PubMed
Clinical Queries provide quick, customized access
00:19:37.654 --> 00:19:40.328 position:50% align:middle
to facilitate discovery of the PubMed resources,
00:19:40.328 --> 00:19:43.854 position:50% align:middle
getting them available as
quickly as possible to individuals.
00:19:43.854 --> 00:19:49.644 position:50% align:middle
We run these filters by topic, research
topic categories but we're also able to help
00:19:49.644 --> 00:19:54.474 position:50% align:middle
people create individual clinical
queries for their own clinical populations.
00:19:54.474 --> 00:19:59.366 position:50% align:middle
This does help us to accelerate discovery
and opens up the literature more quickly.
00:19:59.366 --> 00:20:04.322 position:50% align:middle
Opening up the literature is not only making the
literature available but making it accessible in ways
00:20:04.322 --> 00:20:06.055 position:50% align:middle
that people can consume it.
00:20:06.055 --> 00:20:11.574 position:50% align:middle
A good deal of our work though focuses on
research data sets and making research data sets
00:20:11.574 --> 00:20:14.960 position:50% align:middle
reusable and discoverable around the world.
00:20:14.960 --> 00:20:19.373 position:50% align:middle
On the screen in front of you, you see a
number of different important research data sets
00:20:19.373 --> 00:20:25.401 position:50% align:middle
such as the Kids First study from Pennsylvania
or the All of Us, the million participants of the…
00:20:25.401 --> 00:20:30.324 position:50% align:middle
participants to understand health and everyday
living, Cancer Moonshot, the Framingham Study,
00:20:30.324 --> 00:20:32.107 position:50% align:middle
and the NCBI.
00:20:32.107 --> 00:20:35.021 position:50% align:middle
That's our National Center
for Biotechnology Information.
00:20:35.021 --> 00:20:42.117 position:50% align:middle
Finding ways to connect these data sets and make them
available by a query not only accelerates research,
00:20:42.117 --> 00:20:45.484 position:50% align:middle
but it also provides a wonderful
platform for training for our students.
00:20:45.484 --> 00:20:51.062 position:50% align:middle
And for those of you who are looking to shape
public policy, being able to access data directly
00:20:51.062 --> 00:20:54.959 position:50% align:middle
provides a strengthening to the base
of the policies you're trying to shape.
00:20:54.959 --> 00:21:01.210 position:50% align:middle
Most recently, we've been looking at how to better
support the use of model organisms in research.
00:21:01.210 --> 00:21:06.644 position:50% align:middle
Model organisms are important because they provide
a way to better understand a particular physiologic
00:21:06.644 --> 00:21:12.634 position:50% align:middle
oriented process that's relevant to humans,
but can be studied in another species.
00:21:12.634 --> 00:21:18.819 position:50% align:middle
In our case, most of our model organisms
provide part replicas of humans like zebrafish,
00:21:18.819 --> 00:21:21.069 position:50% align:middle
or rats or mice.
00:21:21.069 --> 00:21:23.810 position:50% align:middle
Some of you may have even
studied some of these in school.
00:21:23.810 --> 00:21:29.501 position:50% align:middle
But to build the knowledge base that connects them
together requires that we construct the ecosystem
00:21:29.501 --> 00:21:31.400 position:50% align:middle
that you see on the left-hand side here.
00:21:31.400 --> 00:21:36.749 position:50% align:middle
So on the upper part of that left-hand
blue document, you see various organisms,
00:21:36.749 --> 00:21:42.670 position:50% align:middle
the sequences, and the anatomy,
and images about those organisms.
00:21:42.670 --> 00:21:49.832 position:50% align:middle
In the two circles, you see the data related to
those organisms, transcriptomes, genes, orthologs,
00:21:49.832 --> 00:21:52.733 position:50% align:middle
as well as the tools to interrogate the data.
00:21:52.733 --> 00:21:57.205 position:50% align:middle
The BLAST search was just a broad
analysis search or genome annotation.
00:21:57.205 --> 00:22:02.516 position:50% align:middle
The role of the National Library of Medicine is to
bring those two circles together with the communities
00:22:02.516 --> 00:22:03.995 position:50% align:middle
that want to study them.
00:22:03.995 --> 00:22:09.646 position:50% align:middle
And we also work very closely with those communities
to annotate and to provide the critical description
00:22:09.646 --> 00:22:14.984 position:50% align:middle
of what gene structure appears in multiple organisms,
for example, or doesn't have the same function
00:22:14.984 --> 00:22:16.396 position:50% align:middle
in multiple organisms.
00:22:16.396 --> 00:22:23.666 position:50% align:middle
So, our library is designed not only for human readers
but also for machine processing of large and vast
00:22:23.666 --> 00:22:25.043 position:50% align:middle
amounts of data.
00:22:25.043 --> 00:22:30.306 position:50% align:middle
Our goals are to provide a central
portal, the ability to work in the cloud,
00:22:30.306 --> 00:22:34.687 position:50% align:middle
the ability to have large-scale compute
properties that don't require a single institution
00:22:34.687 --> 00:22:41.398 position:50% align:middle
to hold a number of resources, to include shared tools
and scalable analysis that provides the infrastructure
00:22:41.398 --> 00:22:42.698 position:50% align:middle
for data science.
00:22:42.698 --> 00:22:45.618 position:50% align:middle
Now, nursing is just beginning
to really exploit these resources.
00:22:45.618 --> 00:22:49.527 position:50% align:middle
And I'm looking forward to making them
even more useful to the nursing community.
00:22:49.527 --> 00:22:54.554 position:50% align:middle
The National Library of Medicine, in addition
to providing a wide range of resources
00:22:54.554 --> 00:23:00.199 position:50% align:middle
to communicate about and support the conduct
of research, also conducts research itself.
00:23:00.199 --> 00:23:05.838 position:50% align:middle
Let me pause here and take you
to another poll and ask you to…
00:23:05.838 --> 00:23:12.011 position:50% align:middle
Did you know know that the
National Library of Medicine has a…
00:23:12.011 --> 00:23:17.962 position:50% align:middle
funds both internal research in our campus
at Bethesda, as well as extramural research?
00:24:15.900 --> 00:24:19.764 position:50% align:middle
Most of you did not know that the
National Library of Medicine funded research.
00:24:19.764 --> 00:24:25.825 position:50% align:middle
But now I'm delighted to tell you that we spend
over $60 million around the country every year
00:24:25.825 --> 00:24:30.555 position:50% align:middle
creating the kind of research
infrastructure necessary to support patient care,
00:24:30.555 --> 00:24:34.995 position:50% align:middle
as well as necessary to support
effective information management use.
00:24:34.995 --> 00:24:39.991 position:50% align:middle
On the screen in front of you, you
see our broad-based research portfolio.
00:24:39.991 --> 00:24:45.615 position:50% align:middle
Our research portfolio focuses on understanding
the machine learning tools that can be used
00:24:45.615 --> 00:24:50.918 position:50% align:middle
in a variety of resources but particularly applied
to learning from electronic health records.
00:24:50.918 --> 00:24:53.740 position:50% align:middle
We support information standards and discovery.
00:24:53.740 --> 00:25:00.059 position:50% align:middle
We do a lot of our work on image processing
and creating a way to use machine learning
00:25:00.059 --> 00:25:01.633 position:50% align:middle
to interpret images.
00:25:01.633 --> 00:25:07.463 position:50% align:middle
Our focus here is not so much to cure cancer
but to build better tools and make the tools
00:25:07.463 --> 00:25:11.476 position:50% align:middle
better available for the analysts
who are working to cure cancer.
00:25:11.476 --> 00:25:16.746 position:50% align:middle
We focus on natural language processing a lot,
extracting meaning from text but also on statistical
00:25:16.746 --> 00:25:23.737 position:50% align:middle
analysis and our biologically-driven research makes use
of our genomic databases to be sure that we can better
00:25:23.737 --> 00:25:27.785 position:50% align:middle
understand and have access to the
secrets that are hidden within genes.
00:25:27.785 --> 00:25:32.934 position:50% align:middle
A lot of our work does focus on the electronic
health record as a source of information
00:25:32.934 --> 00:25:35.267 position:50% align:middle
and engagement for understanding.
00:25:35.267 --> 00:25:40.688 position:50% align:middle
What we're trying to envision is a future of
understanding how an individual from the level
00:25:40.688 --> 00:25:47.449 position:50% align:middle
of their genetic structure to their functional
everyday being, to their image, sorry,
00:25:47.449 --> 00:25:53.586 position:50% align:middle
their anatomy and physiology to bring this together
in a way for us to better understand and therefore,
00:25:53.586 --> 00:25:57.668 position:50% align:middle
as a society, better improve the health for all.
00:25:57.668 --> 00:26:03.056 position:50% align:middle
Some of the work that we do focus very
specifically on tools that could be of use to nurses.
00:26:03.056 --> 00:26:06.570 position:50% align:middle
A project in particular is a
project called the THYME Project.
00:26:06.570 --> 00:26:10.486 position:50% align:middle
This is conducted in Boston
by Guergana Savova's group.
00:26:10.486 --> 00:26:16.192 position:50% align:middle
And basically what she's learning to do is
to take a broad range of clinical information
00:26:16.192 --> 00:26:20.416 position:50% align:middle
from the clinical text and begin
to provide sequence narratives.
00:26:20.416 --> 00:26:25.992 position:50% align:middle
Now, she's using natural language processing to
create patient timelines and then annotate these
00:26:25.992 --> 00:26:31.715 position:50% align:middle
within a document so that a clinician who's looking
across the broad range of a patient's care challenges
00:26:31.715 --> 00:26:33.834 position:50% align:middle
can see what has happened in what sequence.
00:26:33.834 --> 00:26:39.057 position:50% align:middle
Now, what the National Library of Medicine does
uniquely that other institutes in NIH don't do is we
00:26:39.057 --> 00:26:41.330 position:50% align:middle
try to develop reusable tools.
00:26:41.330 --> 00:26:46.554 position:50% align:middle
So as Dr. Savova's group is developing an
understanding of what constitutes a disorder
00:26:46.554 --> 00:26:49.107 position:50% align:middle
and how do we understand
the clinical narrative over time,
00:26:49.107 --> 00:26:54.245 position:50% align:middle
she's also making those tools available for other
investigators and for other health care systems
00:26:54.245 --> 00:26:57.527 position:50% align:middle
to be able to make use and reuse her information.
00:26:59.362 --> 00:27:02.624 position:50% align:middle
We are quite interested in
better support for clinical trials.
00:27:02.624 --> 00:27:08.729 position:50% align:middle
As you know, the COVID-19 pandemic
recognized and relied on clinical studies
00:27:08.729 --> 00:27:10.869 position:50% align:middle
engaging patients very quickly.
00:27:10.869 --> 00:27:17.250 position:50% align:middle
And yet in order to conduct clinical trials, we need to
have strong and good record systems so that the trial,
00:27:17.250 --> 00:27:21.041 position:50% align:middle
that particular protocol,
the inclusion criteria are all available.
00:27:21.041 --> 00:27:28.230 position:50% align:middle
We have a fantastic resource called ClinicalTrials.gov,
which is a place where all research, clinical trial
00:27:28.230 --> 00:27:33.130 position:50% align:middle
research that is designed either to be
conducted in support of an FDA application
00:27:34.383 --> 00:27:37.513 position:50% align:middle
or is supported by the NIH must be registered.
00:27:37.513 --> 00:27:40.583 position:50% align:middle
Excuse me, the results can also be reported there.
00:27:40.583 --> 00:27:48.542 position:50% align:middle
This ClinicalTrials.gov repository actually allows
for clinical trials as well as patients to better find
00:27:48.542 --> 00:27:50.183 position:50% align:middle
out what studies might be available.
00:27:50.183 --> 00:27:54.895 position:50% align:middle
What's going on in their area that they might
find relevant to someone that they care about
00:27:54.895 --> 00:27:57.468 position:50% align:middle
or help them in their own management of a disease.
00:27:57.468 --> 00:28:07.273 position:50% align:middle
Since 2019, we also report, within one year of
completion, the final outcomes of every clinical trial.
00:28:07.273 --> 00:28:11.819 position:50% align:middle
This is a really important public accountability
responsibility that the NLM takes on.
00:28:11.819 --> 00:28:18.277 position:50% align:middle
We've learned that fully one-third of all
clinical trials funded by NIH never make it into
00:28:18.277 --> 00:28:23.345 position:50% align:middle
a clinical record, never make it into an
archival publication, never even get to a preprint.
00:28:23.345 --> 00:28:29.254 position:50% align:middle
So by having a structured way to report the
outcomes of clinical trials, NLM is supporting rigor
00:28:29.254 --> 00:28:33.453 position:50% align:middle
and reproducibility in clinical trials research.
00:28:33.453 --> 00:28:37.062 position:50% align:middle
We're also trying to find ways
to match patients to trials better.
00:28:37.062 --> 00:28:42.182 position:50% align:middle
Where, in this case, we take the eligibility
criteria that is in the narrative description
00:28:42.182 --> 00:28:48.163 position:50% align:middle
in the ClinicalTrials.gov application and build
tools that allow an investigator to scan through
00:28:48.163 --> 00:28:54.368 position:50% align:middle
clinical records safely and protecting patient privacy
to identify people that might be good candidates
00:28:54.368 --> 00:28:56.817 position:50% align:middle
to participate in a research program.
00:28:56.817 --> 00:29:04.102 position:50% align:middle
The National Library of Medicine then supports
its own research, focusing on reusable methods
00:29:04.102 --> 00:29:10.521 position:50% align:middle
and better use of data including clinical data and
supports the research of others by providing registries
00:29:10.521 --> 00:29:13.712 position:50% align:middle
and repositories such as ClinicalTrials.gov.
00:29:14.615 --> 00:29:19.700 position:50% align:middle
I now want to talk a little bit about what we do
for training before we start going into public policy.
00:29:22.065 --> 00:29:28.263 position:50% align:middle
On your polls now, please turn
to our question about training.
00:29:28.263 --> 00:29:31.566 position:50% align:middle
The NLM recognizes that data
science is new to most people
00:29:31.566 --> 00:29:33.676 position:50% align:middle
and everyone's going to need some kind of training.
00:29:33.676 --> 00:29:38.909 position:50% align:middle
So what type of training do you
think is your preferred means of learning?
00:30:32.570 --> 00:30:38.871 position:50% align:middle
Well, I see a strong interest in webinars,
short, informative focused, and flexible.
00:30:38.871 --> 00:30:43.556 position:50% align:middle
Some preference for Zoom and
no one wants injestible biochips.
00:30:43.556 --> 00:30:45.236 position:50% align:middle
That's a pretty bizarre idea.
00:30:45.236 --> 00:30:50.004 position:50% align:middle
But actually, I had a colleague about 20 years ago
advocating that we should somehow find a way to
00:30:50.004 --> 00:30:54.638 position:50% align:middle
encapsulate knowledge into
capsules and then swallow it.
00:30:54.638 --> 00:30:59.930 position:50% align:middle
Never saw that one as becoming a great use
for us, particularly for professional development.
00:31:00.044 --> 00:31:04.513 position:50% align:middle
But the National Library of Medicine is deeply
involved in training across the career lifespan.
00:31:05.012 --> 00:31:09.461 position:50% align:middle
So let's talk about some of the things that we
do for expanding and enhancing research training
00:31:09.461 --> 00:31:11.752 position:50% align:middle
for biomedical informatics and data science.
00:31:11.752 --> 00:31:16.943 position:50% align:middle
I see a strong interest in webinars,
short, informative, focused, and flexible.
00:31:16.943 --> 00:31:20.739 position:50% align:middle
Some preference for Zoom, sorry about that.
00:31:22.216 --> 00:31:28.292 position:50% align:middle
The training that we do at the National Library of
Medicine focuses on skills training for biomedical
00:31:28.292 --> 00:31:29.963 position:50% align:middle
informatics and data science.
00:31:29.963 --> 00:31:36.518 position:50% align:middle
We provide training to undergraduates, to
doctoral students, and to postdoctoral students.
00:31:36.518 --> 00:31:42.004 position:50% align:middle
Nurses are eligible to participate in our training
programs, and many of our training programs exist
00:31:42.004 --> 00:31:47.165 position:50% align:middle
in schools and universities that have
strong partnerships with schools of nursing.
00:31:47.165 --> 00:31:52.263 position:50% align:middle
These training programs provide support and a
stipend for an individual to study for several years.
00:31:52.263 --> 00:31:57.063 position:50% align:middle
The important goal in the beginning of our
training program is to begin...to come with an idea,
00:31:57.063 --> 00:32:01.203 position:50% align:middle
come with a thought, come with a
question that can be answered by developing
00:32:01.203 --> 00:32:04.690 position:50% align:middle
better methods and better use of data and information.
00:32:04.690 --> 00:32:07.871 position:50% align:middle
We also provide training across society.
00:32:07.871 --> 00:32:12.993 position:50% align:middle
We recognize that laboratory scientists,
patients, and clinicians all are being faced with
00:32:12.993 --> 00:32:14.837 position:50% align:middle
this data science revolution.
00:32:14.893 --> 00:32:20.109 position:50% align:middle
And it's really quite a step away from what we've
learned in the developing evidence-based practice
00:32:20.109 --> 00:32:23.065 position:50% align:middle
or some of what we learned in
our research programs in school.
00:32:23.065 --> 00:32:29.274 position:50% align:middle
So we are focusing a lot on the use of webinars,
particularly webinars that make the library's resources
00:32:29.274 --> 00:32:32.026 position:50% align:middle
more useful to people around the world.
00:32:32.026 --> 00:32:34.473 position:50% align:middle
But we don't stop with professionals.
00:32:34.473 --> 00:32:39.946 position:50% align:middle
We also are trying to reach into the next
generation of lay people, of consumers,
00:32:39.946 --> 00:32:45.812 position:50% align:middle
and librarians to make sure that the data
revolution that's coming is available to everyone.
00:32:45.812 --> 00:32:49.641 position:50% align:middle
In the screen in front of you,
you see the map of the United States
00:32:49.641 --> 00:32:54.783 position:50% align:middle
and those star points indicate the regions of the
network of theNational Library of Medicine.
00:32:54.783 --> 00:33:01.252 position:50% align:middle
The National Library of Medicine network is 8,000
points of presence around the country that are driven
00:33:01.252 --> 00:33:07.705 position:50% align:middle
to best understanding to best development
of the library's resources in the community.
00:33:07.705 --> 00:33:12.450 position:50% align:middle
So we have close connections with communities,
we have individuals that can help train
00:33:12.450 --> 00:33:15.595 position:50% align:middle
or help make accessible our own resources.
00:33:15.595 --> 00:33:19.895 position:50% align:middle
We use this now, we've used this
several times in the All of Us program.
00:33:19.895 --> 00:33:24.715 position:50% align:middle
We provide the community engagement structure to make
sure that there was somebody present in every community
00:33:24.715 --> 00:33:28.226 position:50% align:middle
to help answer questions in the...under the seal,
00:33:28.226 --> 00:33:33.913 position:50% align:middle
sorry, the Heal Initiative that's
helped to end addictions long term.
00:33:33.913 --> 00:33:38.700 position:50% align:middle
Our network of the National Libraries of Medicine
provided a place for disseminating information,
00:33:38.700 --> 00:33:44.293 position:50% align:middle
and also for getting information to the local
clinicians and researchers about new initiatives
00:33:44.293 --> 00:33:45.810 position:50% align:middle
and new strategies.
00:33:45.810 --> 00:33:50.002 position:50% align:middle
Under the COVID-19 pandemic,
our network once again has come into play.
00:33:50.002 --> 00:33:55.813 position:50% align:middle
Our network includes everything from hospital
libraries to academic health science centers,
00:33:55.813 --> 00:33:57.870 position:50% align:middle
to public libraries in the community.
00:33:57.870 --> 00:34:01.450 position:50% align:middle
And each of those serves slightly different
people, but make sure the resources,
00:34:01.450 --> 00:34:05.030 position:50% align:middle
the National Library of Medicine,
come forward and can be present.
00:34:05.030 --> 00:34:10.716 position:50% align:middle
Now, we're starting to assist with information about
vaccines and helping to improve vaccine acceptance
00:34:10.716 --> 00:34:12.239 position:50% align:middle
across the country.
00:34:12.239 --> 00:34:17.320 position:50% align:middle
Our training programs, sometimes are
degree-granting, sometimes are certificate-producing,
00:34:17.320 --> 00:34:23.506 position:50% align:middle
and sometimes are information-generating for
individuals, all are open and freely available
00:34:23.506 --> 00:34:29.033 position:50% align:middle
around the country, and are freely
available almost online everywhere in the world.
00:34:30.585 --> 00:34:37.263 position:50% align:middle
I now want to turn or my last set of comments in our
last 25 minutes or so to talk about the key concepts
00:34:37.263 --> 00:34:41.990 position:50% align:middle
for this meeting, which is how do we take all
these resources and really begin to inform policy?
00:34:41.990 --> 00:34:45.116 position:50% align:middle
I have two polling questions for you right now
00:34:45.116 --> 00:34:50.753 position:50% align:middle
because I want to better understand
the policies that are most important to you.
00:34:50.900 --> 00:34:53.397 position:50% align:middle
The first question I want you to answer is,
00:34:53.397 --> 00:34:59.930 position:50% align:middle
what is the most critical public policy that
your expertise could help inform and shape?
00:36:32.998 --> 00:36:35.057 position:50% align:middle
Thanks and thanks to whoever's managing the poll.
00:36:35.057 --> 00:36:36.206 position:50% align:middle
I appreciate that.
00:36:36.206 --> 00:36:43.450 position:50% align:middle
So, the major public policy concern that was
identified by this group as critical is promoting
00:36:43.450 --> 00:36:44.879 position:50% align:middle
patient safety in hospitals.
00:36:44.879 --> 00:36:49.167 position:50% align:middle
Almost 60% of you identified
that as your key public policy.
00:36:49.167 --> 00:36:51.644 position:50% align:middle
There are others on here.
00:36:51.644 --> 00:36:55.555 position:50% align:middle
Some are going to write into the chat
with the public policy issues that they had...
00:36:55.555 --> 00:36:56.798 position:50% align:middle
that they're interested in.
00:36:56.798 --> 00:37:00.365 position:50% align:middle
There's about 18% of the people that
were going to write something themselves.
00:37:00.365 --> 00:37:07.565 position:50% align:middle
There is the other policy issues that generated
interest though were reducing maternal mortality.
00:37:07.565 --> 00:37:11.881 position:50% align:middle
About 10% of you are interested in that.
Ensuring food security for all.
00:37:11.881 --> 00:37:18.904 position:50% align:middle
About 5% are interested in that. And preventing
elder abuse, about 8% are interested in that.
00:37:23.596 --> 00:37:29.416 position:50% align:middle
Now, I'm going to take you to this next poll
which is a question about nursing-related policies.
00:37:29.416 --> 00:37:34.473 position:50% align:middle
And I hope you understand the distinction
between public policy and nursing-related policies.
00:37:34.473 --> 00:37:40.111 position:50% align:middle
Nurses must participate in shaping the policies
of health for all, but we also must participate
00:37:40.111 --> 00:37:43.184 position:50% align:middle
in the policies that are relevant to our discipline.
00:37:43.184 --> 00:37:48.727 position:50% align:middle
So, on the screen in front of you, and in
the poll rather, you have a set of four options
00:37:48.727 --> 00:37:51.529 position:50% align:middle
or opportunity to write your own into the chat.
00:38:39.389 --> 00:38:45.441 position:50% align:middle
Well, now, I see a rousing 38% think
we need to focus on workforce development.
00:38:45.441 --> 00:38:49.327 position:50% align:middle
But 35% of you are interested in
practicing at the top of our licenses.
00:38:49.327 --> 00:38:53.919 position:50% align:middle
Only 5, excuse me, 3% are interested in pay equity
00:38:53.919 --> 00:38:58.858 position:50% align:middle
and about 5% of you will write something into the
chat, which we'll take a look at in a few minutes.
00:38:58.858 --> 00:39:04.336 position:50% align:middle
There's many, many, many public
policies that nurses need to participate in,
00:39:04.336 --> 00:39:10.296 position:50% align:middle
and many ways that we will be creating for
the future the kind of policies that are useful
00:39:10.296 --> 00:39:13.668 position:50% align:middle
to bring the health goals that
we want to have for our society.
00:39:13.668 --> 00:39:17.038 position:50% align:middle
Today's focus is largely on
data science and open science.
00:39:17.038 --> 00:39:24.288 position:50% align:middle
That is making sure that the large amount of data that
we have available is useful and used for the purposes
00:39:24.288 --> 00:39:26.048 position:50% align:middle
of health and health science.
00:39:26.048 --> 00:39:31.912 position:50% align:middle
When we move towards a model of open science, we
need to recognize that there are several policy issues
00:39:31.912 --> 00:39:34.416 position:50% align:middle
that have to come into play and interconnect.
00:39:34.416 --> 00:39:38.677 position:50% align:middle
And perhaps none is more important
than the idea of patient privacy.
00:39:38.677 --> 00:39:44.000 position:50% align:middle
How do we make sure we can leverage our understanding
of data, whether it's knowing where you've been walking
00:39:44.000 --> 00:39:49.090 position:50% align:middle
with your cell phone or knowing your
genetic code, in a way that advances society
00:39:49.090 --> 00:39:51.240 position:50% align:middle
without exploiting individuals.
00:39:51.240 --> 00:39:54.595 position:50% align:middle
Nurses must participate in these discussions.
00:39:54.595 --> 00:39:58.900 position:50% align:middle
These discussions are happening at all levels,
from the local to the state, to the county levels,
00:39:58.900 --> 00:40:04.666 position:50% align:middle
and they are providing a way for
individuals to really explore the challenge,
00:40:04.666 --> 00:40:07.957 position:50% align:middle
essentially the trade-off between privacy and science.
00:40:07.957 --> 00:40:15.334 position:50% align:middle
Now, we can make the future that we need to have happen
if nurses are engaged in understanding public policy
00:40:15.334 --> 00:40:16.464 position:50% align:middle
and shaping it.
00:40:16.464 --> 00:40:22.444 position:50% align:middle
So I want to focus my comments now on what are nurse
scholars' special roles in using data-driven science
00:40:22.444 --> 00:40:23.998 position:50% align:middle
to shape policy.
00:40:23.998 --> 00:40:28.382 position:50% align:middle
We can do things that no
other health profession can do.
00:40:28.382 --> 00:40:36.175 position:50% align:middle
So I'd like to consider your…to think about our policy
activities as being grounded in our base discipline.
00:40:36.175 --> 00:40:40.275 position:50% align:middle
And first and foremost,
recognize the dignity of the source.
00:40:40.275 --> 00:40:44.405 position:50% align:middle
That is respecting the dignity of
the individual, the person, the family,
00:40:44.405 --> 00:40:48.845 position:50% align:middle
the community that's providing us with information
should also be benefiting from the provision
00:40:48.845 --> 00:40:55.019 position:50% align:middle
of that information, including being able
to be assured of privacy and confidentiality.
00:40:55.019 --> 00:41:00.295 position:50% align:middle
Next, it's critically important to
have principled approaches to discovery.
00:41:00.295 --> 00:41:05.825 position:50% align:middle
Our nursing science traditions are strong and
theory-driven, and grounded in the ability to better
00:41:05.825 --> 00:41:09.145 position:50% align:middle
understand phenomenon because we use theory.
00:41:09.145 --> 00:41:15.915 position:50% align:middle
This brings us to a way of understanding
patients and the patient experience in novel ways.
00:41:15.915 --> 00:41:21.808 position:50% align:middle
So principled approaches discovery and
use of theory to guide interpretation are critical
00:41:21.808 --> 00:41:27.396 position:50% align:middle
but they allow us to take special attention
to the phenomenon of concern to nursing:
00:41:27.396 --> 00:41:30.142 position:50% align:middle
the diagnosis and treatment of human responses.
00:41:30.142 --> 00:41:35.323 position:50% align:middle
No other discipline focuses on the
diagnosis and treatment of human responses.
00:41:35.323 --> 00:41:41.351 position:50% align:middle
So when that knowledge is needed to shape
policy, we must be the ones that bring it forward
00:41:41.351 --> 00:41:43.465 position:50% align:middle
and make sure it's incorporated.
00:41:43.465 --> 00:41:49.486 position:50% align:middle
We must remember that we should ask and
answer questions that are germane to the discipline
00:41:49.486 --> 00:41:51.629 position:50% align:middle
and to the people that we serve.
00:41:52.913 --> 00:41:57.779 position:50% align:middle
We begin by thinking about how do
we enhance the impact of our science.
00:41:57.779 --> 00:42:02.465 position:50% align:middle
Being a great researcher writing
terrific papers is only part of the story.
00:42:02.465 --> 00:42:07.278 position:50% align:middle
Creating pathways for public discourse,
that's what I want to focus on for the last couple
00:42:07.278 --> 00:42:08.797 position:50% align:middle
of minutes of my talk.
00:42:08.797 --> 00:42:13.688 position:50% align:middle
But you must begin always
with this level of rigor and reproducibility.
00:42:13.688 --> 00:42:22.393 position:50% align:middle
Good science is the foundation of
good policies, and it's our [inaduble].
00:42:22.393 --> 00:42:31.048 position:50% align:middle
Secondly, a step must begin before we begin
anything and that is to build your network.
00:42:31.048 --> 00:42:35.806 position:50% align:middle
Build your networking conversation,
not just in conversation with other researchers,
00:42:35.806 --> 00:42:42.343 position:50% align:middle
but with the people who your research is designed
to help and also with the people who helped to shape
00:42:42.343 --> 00:42:47.720 position:50% align:middle
and manage the policies that are relevant to the
care approaches that you want to have happened.
00:42:47.720 --> 00:42:51.136 position:50% align:middle
Building a network is a career lifetime commitment.
00:42:51.136 --> 00:42:53.506 position:50% align:middle
It doesn't happen project by project.
00:42:53.506 --> 00:42:59.651 position:50% align:middle
And being known, sharing your willingness to
work on policy, sharing your concerns about policies
00:42:59.651 --> 00:43:03.278 position:50% align:middle
with other policymakers is
a way of framing this network.
00:43:03.278 --> 00:43:08.965 position:50% align:middle
The next step is to know what you
know and to know what you don't know.
00:43:08.965 --> 00:43:15.410 position:50% align:middle
But often, as we shape public policy,
we have a focus on a thematic concern.
00:43:15.410 --> 00:43:21.020 position:50% align:middle
But we need to be sure we also bring together
those who understand the analytics that are used
00:43:21.020 --> 00:43:26.777 position:50% align:middle
to highlight that thematic concern, the statistics,
or the data science that underlies an activity.
00:43:26.777 --> 00:43:32.728 position:50% align:middle
It is not solely the responsibility of nurses to know
everything, but to know that everything that's critical
00:43:32.728 --> 00:43:38.299 position:50% align:middle
to their policy concept is in fact made
present, made available to the group.
00:43:41.371 --> 00:43:46.908 position:50% align:middle
Amplifying your story comes in part by
preserving trust and provenance in a highly
00:43:46.908 --> 00:43:49.098 position:50% align:middle
distributed information environment.
00:43:49.098 --> 00:43:54.501 position:50% align:middle
We well recognize that we're deeply suffering
from an information-disinformation tension
00:43:54.501 --> 00:43:56.658 position:50% align:middle
in our society right now.
00:43:56.658 --> 00:44:02.696 position:50% align:middle
But for nursing, to get their materials explained
and available to the public and thoughtfully
00:44:02.696 --> 00:44:09.919 position:50% align:middle
entered into the public policy debate really
requires that we use strategies that amplify trust.
00:44:09.919 --> 00:44:15.038 position:50% align:middle
and provenances the consistency of a message
and the source of the message in a highly
00:44:15.038 --> 00:44:17.028 position:50% align:middle
distributed information environment.
00:44:17.028 --> 00:44:23.338 position:50% align:middle
When we make use of Twitter or other kinds of
public social media, we have to remember that our job
00:44:23.338 --> 00:44:29.518 position:50% align:middle
is to leverage these in a way that is trustable and
amplifying a message, not adding to the confusion
00:44:29.518 --> 00:44:31.253 position:50% align:middle
of the conversation.
00:44:33.544 --> 00:44:38.859 position:50% align:middle
We need to think about how to leverage and how
to make good use of these emerging technologies.
00:44:38.859 --> 00:44:45.907 position:50% align:middle
How could artificial intelligence or augmented reality
help to bring forward an illustration of the policy
00:44:45.907 --> 00:44:49.457 position:50% align:middle
you're trying to shape or
the consequences of that policy?
00:44:49.457 --> 00:44:54.654 position:50% align:middle
Considering how different ways of communicating,
providing multiple channels of interaction,
00:44:54.654 --> 00:44:58.911 position:50% align:middle
will allow your research to be presented
to a number of different audiences.
00:44:58.911 --> 00:45:05.006 position:50% align:middle
The opportunities to engage with the public have
never been greater,. The chance for nurses to shape,
00:45:05.006 --> 00:45:10.098 position:50% align:middle
to build their networks, to amplify
their stories will come from effective use
00:45:10.098 --> 00:45:12.527 position:50% align:middle
of emerging technologies.
00:45:12.527 --> 00:45:18.368 position:50% align:middle
And please don't forget that storytelling
is critical in policy development.
00:45:18.368 --> 00:45:21.143 position:50% align:middle
The plural of anecdotes isn't data.
00:45:21.143 --> 00:45:27.129 position:50% align:middle
So just having lots and lots of stories doesn't replace
the need for data-driven sciences to shape policies
00:45:27.129 --> 00:45:30.726 position:50% align:middle
but the stories are what sell the science.
00:45:30.726 --> 00:45:35.606 position:50% align:middle
Stories and storytelling of the impact,
the consequences, the opportunity,
00:45:35.606 --> 00:45:43.349 position:50% align:middle
the ability, the unique perspective that your research
brings to a particular problem takes it a long way
00:45:43.349 --> 00:45:47.618 position:50% align:middle
to helping others who have the ability
to shape and decide on the policies,
00:45:47.618 --> 00:45:52.543 position:50% align:middle
which policies should be attended to
and how they should be enacted.
00:45:52.543 --> 00:45:57.738 position:50% align:middle
And, finally, please think
carefully about transporting.
00:45:57.738 --> 00:46:00.473 position:50% align:middle
How do you transform science into action?
00:46:00.473 --> 00:46:04.773 position:50% align:middle
Sometimes, it's through clinical care.
Sometimes, it's through the ability to engage
00:46:04.773 --> 00:46:09.440 position:50% align:middle
with individuals and develop a story
that they can then take forward.
00:46:09.440 --> 00:46:16.053 position:50% align:middle
Sometimes, it's the changing of a product or developing
of a whole new model of a community engagement.
00:46:16.053 --> 00:46:22.943 position:50% align:middle
There's lots of ways that we transport our science into
action and nursing creativity can help us go a long way
00:46:22.943 --> 00:46:29.047 position:50% align:middle
in addressing the critical policies concerns that
can be answered and addressed by the knowledge
00:46:29.047 --> 00:46:32.513 position:50% align:middle
that we build uniquely as nursing around society.
00:46:32.513 --> 00:46:39.685 position:50% align:middle
I want to close my remarks by reminding you that the
National Library of Medicine has, for almost 200 years,
00:46:39.685 --> 00:46:43.075 position:50% align:middle
served as a trusted source of health information.
00:46:43.075 --> 00:46:50.035 position:50% align:middle
That trusted source of health information benefits from
nursing and nursing knowledge and should support and
00:46:50.035 --> 00:46:53.535 position:50% align:middle
develop nursing and nursing knowledge as we go forward.
00:46:53.535 --> 00:46:57.435 position:50% align:middle
I look forward to continuing to
work with you in any way that I can.
00:46:57.435 --> 00:47:01.026 position:50% align:middle
You can reach me on email or on Twitter
00:47:01.026 --> 00:47:05.443 position:50% align:middle
or every Wednesday morning, the blog
Musings from the Mezzanine comes out.
00:47:05.443 --> 00:47:08.789 position:50% align:middle
I try to showcase nursing
stories periodically through the year.
00:47:08.789 --> 00:47:13.053 position:50% align:middle
If one of you has an idea that you'd
like to include in a Musings blog post,
00:47:13.053 --> 00:47:14.393 position:50% align:middle
please reach out and get in touch with me.
00:47:14.393 --> 00:47:16.598 position:50% align:middle
I often have guest bloggers.
00:47:16.598 --> 00:47:18.118 position:50% align:middle
Thanks very much for your time.
00:47:18.118 --> 00:47:20.582 position:50% align:middle
Thank you for your patience with the technologies.
00:47:20.582 --> 00:47:23.892 position:50% align:middle
Thanks to the tech people who've
been very supportive through this session
00:47:23.892 --> 00:47:28.852 position:50% align:middle
and I believe I've left us about 10
minutes for some questions and conversation.
00:47:54.886 --> 00:47:59.242 position:50% align:middle
- Dr. Brennan, thank you very much.
That was an excellent presentation and
00:47:59.242 --> 00:48:02.316 position:50% align:middle
extremely informative and enlightening.
00:48:02.316 --> 00:48:07.769 position:50% align:middle
I'd like to open it up
now for questions for Dr. Brennan.
00:48:07.769 --> 00:48:11.814 position:50% align:middle
Please put them in the Q&A section on your website.
00:48:11.814 --> 00:48:17.016 position:50% align:middle
Dr. Brennan, the first question
I have is from Carrie Downing.
00:48:17.016 --> 00:48:23.090 position:50% align:middle
She asks, "How many clinical trials
do not make it to publication?"
00:48:23.090 --> 00:48:27.611 position:50% align:middle
She says she knows you mentioned
it but she missed the number.
00:48:27.611 --> 00:48:32.662 position:50% align:middle
- Carrie, this is a number I'm not
very proud to be restating again.
00:48:32.662 --> 00:48:39.381 position:50% align:middle
But from the work of Deborah Zarin, Z-A-R-I-N,
over the last five years, we think that it's about
00:48:39.381 --> 00:48:45.602 position:50% align:middle
one-third of all clinical trials that were funded
by the NIH never appear on publication.
00:48:45.602 --> 00:48:50.601 position:50% align:middle
Now, there are other clinical trials that are
not funded by the NIH that don't appear,
00:48:50.601 --> 00:48:52.339 position:50% align:middle
don't ever make it to publication.
00:48:52.339 --> 00:48:58.406 position:50% align:middle
And frankly, we also have challenges with
clinical trials that are conducted internationally.
00:48:58.406 --> 00:49:05.094 position:50% align:middle
Sometimes, the challenge is because there are…
there's a difference in the way studies are conducted,
00:49:05.094 --> 00:49:08.884 position:50% align:middle
there's culture around sampling
plans and an analytic plan.
00:49:08.884 --> 00:49:15.276 position:50% align:middle
Sometimes, there's no results and journals are
actually much more likely to publish positive results
00:49:15.276 --> 00:49:20.204 position:50% align:middle
or results that at least are definitive, rather
than a study that comes to the end and says,
00:49:20.204 --> 00:49:22.408 position:50% align:middle
"Well, we don't really know
that this made a difference ."
00:49:22.408 --> 00:49:29.487 position:50% align:middle
One of the critical pieces about communication
about studies is knowing what failed is as important
00:49:29.487 --> 00:49:31.234 position:50% align:middle
as knowing what worked.
00:49:31.234 --> 00:49:36.153 position:50% align:middle
And that kind of information can be found by
looking at the ClinicalTrials.gov repository
00:49:36.153 --> 00:49:37.869 position:50% align:middle
to look at our results.
00:49:40.206 --> 00:49:41.223 position:50% align:middle
- Thank you.
00:49:41.223 --> 00:49:44.469 position:50% align:middle
I have another question for you from Kathy Scott.
00:49:44.469 --> 00:49:53.146 position:50% align:middle
She asks, "Could you say more about open science
publications and the responsibility of the author
00:49:53.146 --> 00:49:55.299 position:50% align:middle
versus the publisher?"
00:49:55.299 --> 00:50:00.704 position:50% align:middle
- I can say to…from the perspective of the
director of the National Library of Medicine
00:50:00.704 --> 00:50:04.485 position:50% align:middle
but I'm not a publisher so I
can't speak specifically for them.
00:50:04.743 --> 00:50:10.307 position:50% align:middle
When you say open science publications, I believe
you might be referring to open access publication.
00:50:10.400 --> 00:50:18.123 position:50% align:middle
In the PubMed Central repository we have
something referred to as the open access subset.
00:50:18.123 --> 00:50:22.381 position:50% align:middle
These are journals where the
journals themselves are completely open.
00:50:22.381 --> 00:50:28.013 position:50% align:middle
Now, in most open access journals,
that is, the journal makes all of its publications,
00:50:28.013 --> 00:50:32.685 position:50% align:middle
all of its articles available without
a paywall and available electronically,
00:50:32.685 --> 00:50:39.910 position:50% align:middle
in most open access publications, there is a process
called author use fees or author publication fees.
00:50:39.910 --> 00:50:47.077 position:50% align:middle
And this is a fee that the author pays, as the
publication is being developed, to support the cost
00:50:47.077 --> 00:50:48.585 position:50% align:middle
of managing the journal.
00:50:48.585 --> 00:50:56.290 position:50% align:middle
So in many cases, author fees or other publication
fees are required to support an open-access journal.
00:50:56.290 --> 00:51:04.527 position:50% align:middle
The National Institutes of Health does allow
investigators to include in their grant budget
00:51:04.527 --> 00:51:07.864 position:50% align:middle
fees that would need to be
paid for open access journal.
00:51:07.864 --> 00:51:14.056 position:50% align:middle
So the fee can be charged to a grant budget
and that does help support the ability to publish
00:51:14.056 --> 00:51:15.574 position:50% align:middle
in a lot of different outlets.
00:51:15.574 --> 00:51:20.414 position:50% align:middle
We encourage authors to use
open access journals where possible.
00:51:20.414 --> 00:51:25.703 position:50% align:middle
The National Institutes of Health has a wonderful
set of recommendations of how to pick a good journal
00:51:25.703 --> 00:51:26.833 position:50% align:middle
to publish in.
00:51:26.833 --> 00:51:31.787 position:50% align:middle
And this is a way to help ensure
that your materials reach the most people.
00:51:31.787 --> 00:51:37.600 position:50% align:middle
Now, publishing in a what we would consider a
traditional journal isn't necessarily a bad thing.
00:51:37.600 --> 00:51:41.849 position:50% align:middle
And the journals are beginning to
become more flexible in their approaches.
00:51:41.849 --> 00:51:46.441 position:50% align:middle
So even the journal of my field, the Journal
of the American Medical Informatics Association
00:51:46.441 --> 00:51:49.704 position:50% align:middle
has an ability to unlock journal articles.
00:51:49.704 --> 00:51:54.268 position:50% align:middle
That is we can open journal articles,
remove the paywall for everyone.
00:51:54.268 --> 00:51:58.712 position:50% align:middle
This then allows information to
be distributed much more quickly.
00:51:58.712 --> 00:52:03.840 position:50% align:middle
And just as a reminder, the NIH
does have a policy, that within one year,
00:52:03.840 --> 00:52:11.583 position:50% align:middle
any articles describing research supported by
an NIH funding must be completely open access.
00:52:11.583 --> 00:52:14.365 position:50% align:middle
That is the journal can hold an embargo for one year.
00:52:14.365 --> 00:52:18.653 position:50% align:middle
But after one year the article has
to be freely available to the public.
00:52:18.653 --> 00:52:25.089 position:50% align:middle
In the last year or so, we've been seeing
new initiatives come through the Congress
00:52:25.089 --> 00:52:30.963 position:50% align:middle
that have required that if we're going to receive
special funds for a certain kind of research
00:52:30.963 --> 00:52:36.985 position:50% align:middle
at NIH, we must make the journal…all
the articles funded under those special initiatives
00:52:36.985 --> 00:52:40.399 position:50% align:middle
really accessible immediately
at the point of publication.
00:52:40.399 --> 00:52:45.032 position:50% align:middle
And that includes the 21st Century Cures,
which is funding a lot of cancer research right now,
00:52:45.032 --> 00:52:49.359 position:50% align:middle
and the Heal Initiative,
helping to end addictions long term.
00:52:49.359 --> 00:52:56.064 position:50% align:middle
In both of these cases, the Congress has
recognized the urgency of getting information
00:52:56.064 --> 00:53:01.308 position:50% align:middle
out to the public really requires that the
information be available as quickly as possible.
00:53:03.659 --> 00:53:04.817 position:50% align:middle
- Great. Thank you.
00:53:04.817 --> 00:53:13.140 position:50% align:middle
And I have another question from Supa Tula who
asks, "Do you see the term 'evidence-based research'
00:53:13.140 --> 00:53:18.629 position:50% align:middle
being replaced in light of the
expanding field of data science?"
00:53:18.629 --> 00:53:23.312 position:50% align:middle
- This is a really good question, and I'm
really glad you brought it up because we
00:53:23.312 --> 00:53:28.983 position:50% align:middle
worked really hard in nursing to talk about
evidence-based practice and now we're kind of changing
00:53:28.983 --> 00:53:30.153 position:50% align:middle
the game a little bit.
00:53:30.153 --> 00:53:32.314 position:50% align:middle
And people want to know, well, what's really different?
00:53:32.314 --> 00:53:33.585 position:50% align:middle
What's new here?
00:53:33.585 --> 00:53:39.702 position:50% align:middle
Many of the data-driven studies, the data
science studies that we are involved with
00:53:39.702 --> 00:53:45.165 position:50% align:middle
do not provide the same kind of
evidence that traditional clinical trials provide.
00:53:45.165 --> 00:53:50.223 position:50% align:middle
So there will always be a place for the
evidence generated through clinical trials.
00:53:50.223 --> 00:53:56.804 position:50% align:middle
However, more importantly, is for individuals
to consider what constitutes evidence.
00:53:56.804 --> 00:54:01.045 position:50% align:middle
And we see with data science
a broadening of what constitutes evidence.
00:54:01.045 --> 00:54:07.314 position:50% align:middle
Many data science studies are hypothesis-generating
as opposed to hypothesis-resolving.
00:54:07.314 --> 00:54:13.635 position:50% align:middle
So a data science study might identify patterns
that had not previously been identified,
00:54:13.635 --> 00:54:18.148 position:50% align:middle
inspect those patterns, and provide
ways to then subsequently do testing
00:54:18.148 --> 00:54:20.193 position:50% align:middle
different kinds of evaluation.
00:54:20.193 --> 00:54:27.594 position:50% align:middle
I also see a trend towards expanding
from clinical trials to observational studies,
00:54:27.594 --> 00:54:31.209 position:50% align:middle
and practical clinical trials
as another kind of evidence.
00:54:31.209 --> 00:54:39.413 position:50% align:middle
Essentially, the concept of clinical trials is a highly
controlled process where only under certain conditions
00:54:39.413 --> 00:54:45.953 position:50% align:middle
is a very specified intervention evaluated against
other interventions or against a usual care treatment.
00:54:45.953 --> 00:54:51.983 position:50% align:middle
Yet sometimes, the constraints of a clinical trial
are too constraining and they don't depict the reality
00:54:51.983 --> 00:54:53.283 position:50% align:middle
of everyday living.
00:54:53.283 --> 00:54:58.088 position:50% align:middle
In my own work, what I've noticed is that the way
people organize health information in their house
00:54:58.088 --> 00:55:02.989 position:50% align:middle
actually varies and affects their ability
to remember to take their medications.
00:55:02.989 --> 00:55:09.174 position:50% align:middle
So, when I work with people who are developing homecare
clinical trials, I try to encourage them to take a map
00:55:09.174 --> 00:55:11.604 position:50% align:middle
of the house, take a look at
what else is going on there.
00:55:11.604 --> 00:55:16.120 position:50% align:middle
Now, in your future, what I hope
we'll see is not evidence-based
00:55:16.120 --> 00:55:20.662 position:50% align:middle
versus data science, but an
appreciation of what data science approaches
00:55:20.662 --> 00:55:23.822 position:50% align:middle
can provide to the evidence-based for nursing practice.
00:55:26.327 --> 00:55:28.027 position:50% align:middle
- Thank you very much.
00:55:28.027 --> 00:55:31.339 position:50% align:middle
I have a question from Katherine Stansfield.
00:55:31.339 --> 00:55:39.189 position:50% align:middle
And she asks, "Is open access
available for all nurses internationally?"
00:55:41.335 --> 00:55:44.829 position:50% align:middle
- Katherine, that's a very good question.
00:55:44.829 --> 00:55:52.392 position:50% align:middle
Oopen access, any journal,
any article that is identified in PubMed Central,
00:55:52.392 --> 00:55:58.767 position:50% align:middle
or any journal that's identified as an open-access
journal in PubMed Central are available internationally
00:55:58.767 --> 00:56:01.202 position:50% align:middle
with one constraint.
00:56:01.202 --> 00:56:07.948 position:50% align:middle
And that is, in countries where there is
a constraint on internet use or internet access,
00:56:07.948 --> 00:56:12.293 position:50% align:middle
those individuals are sometimes
not able to get to our resources.
00:56:15.756 --> 00:56:16.472 position:50% align:middle
- Thank you.
00:56:16.472 --> 00:56:20.768 position:50% align:middle
I have one last question for you from Michelle Buck.
00:56:20.768 --> 00:56:25.708 position:50% align:middle
She says, "Thank you for an
excellent and informative presentation.
00:56:25.708 --> 00:56:34.716 position:50% align:middle
Is the AI process you've described to identify the best
resources for data search used by any other data
00:56:34.716 --> 00:56:38.588 position:50% align:middle
repositories or is it unique to PubMed?"
00:56:38.588 --> 00:56:41.274 position:50% align:middle
- That's another good question.
00:56:41.274 --> 00:56:46.468 position:50% align:middle
We work very closely with our colleagues at Google,
who have a very sophisticated search process,
00:56:46.468 --> 00:56:52.549 position:50% align:middle
and with colleagues around the world
who maintain literature and data resources.
00:56:52.549 --> 00:56:59.039 position:50% align:middle
So the algorithm that we use and the
way it is implemented is unique to the NIH.
00:56:59.039 --> 00:57:04.233 position:50% align:middle
It is documented in an article in Nature from 2018.
00:57:04.233 --> 00:57:07.461 position:50% align:middle
The first author is Lu, L-U.
00:57:07.461 --> 00:57:13.705 position:50% align:middle
And the algorithm is designed to
be optimized for an individual search.
00:57:13.705 --> 00:57:18.464 position:50% align:middle
So it's not defining what is
the best article about wound care?
00:57:18.464 --> 00:57:21.267 position:50% align:middle
Or what is the best article about anxiety management?
00:57:21.267 --> 00:57:26.759 position:50% align:middle
It says, "Given what you're searching for,
what is the best match to your questions?"
00:57:26.759 --> 00:57:32.453 position:50% align:middle
This actually relates a little bit to our question
earlier about,to what extent does data science compete
00:57:32.453 --> 00:57:34.327 position:50% align:middle
with evidence-based practice?
00:57:34.327 --> 00:57:38.373 position:50% align:middle
When we use AI, we're using it for a specific purpose.
00:57:38.373 --> 00:57:41.772 position:50% align:middle
And we're very cautious not to go beyond that.
00:57:41.772 --> 00:57:48.769 position:50% align:middle
And that's part of why we do not provide authors,
for example, information about how often their
00:57:48.769 --> 00:57:51.753 position:50% align:middle
particular article turned up in an individual search.
00:57:51.753 --> 00:57:54.249 position:50% align:middle
We provided information about the citations.
00:57:54.249 --> 00:57:59.500 position:50% align:middle
That is once an individual has published a paper
and cited an article, we can provide quick access
00:57:59.500 --> 00:58:01.656 position:50% align:middle
to the number of times an article was cited.
00:58:01.656 --> 00:58:06.526 position:50% align:middle
But we don't want to see this as a competition,
or some kind of a gold star that your article got
00:58:06.526 --> 00:58:07.856 position:50% align:middle
to pulled more than others.
00:58:07.856 --> 00:58:14.196 position:50% align:middle
Our approaches to searching and search itself
is a wonderful point of research right now,
00:58:14.196 --> 00:58:18.681 position:50% align:middle
very exciting area of research, where
lots of work is being done to try to determine
00:58:18.681 --> 00:58:20.866 position:50% align:middle
the best most efficient way to search.
00:58:20.866 --> 00:58:26.296 position:50% align:middle
My hope in the future is that our search algorithms
will become more in the moment being able to answer
00:58:26.296 --> 00:58:28.392 position:50% align:middle
questions on the fly as they arise.
00:58:30.178 --> 00:58:37.179 position:50% align:middle
- Dr. Brennan, thank you so very much for your
excellent presentation and the answers to all these
00:58:37.179 --> 00:58:39.120 position:50% align:middle
really important questions.
00:58:39.120 --> 00:58:40.504 position:50% align:middle
Thank you again.
00:58:40.504 --> 00:58:43.066 position:50% align:middle
- Thank you and good luck with your program today.
00:58:43.066 --> 00:58:44.554 position:50% align:middle
I appreciate being invited.
00:58:44.554 --> 00:58:45.602 position:50% align:middle
Thank you.
- Thank you.