Last year we published a blog on my birthday . . . I love my birthday! As I wrote last year . . . When you grow up in a family of 10 kids, like I did, your birthday is a very special day. I celebrated my birthday last week and spent time with my dear friend, Viki, and took the opportunity to celebrate my life yet lived.
At this point in my life, I find myself consumed with the awareness of how precious life is and how short it feels. The pandemic aggravated a sense that people are vulnerable, life is fragile, and there’s not much time. This sensation made me feel rather depressed. I’m not quite sure why as it’s been a busy and productive year.
Over the past year, NLM accomplished so much by helping the NIH build the data infrastructure for genomic discovery to better respond to the COVID-19 pandemic and prepare for future ones; conducting research on the microbiome; and determining whether we could detect the presence of certain viruses, including SARS-CoV-2, through the analysis of wastewater. We funded new research to make it easier to understand health data and supported more than 300 trainees and fellows through our Extramural Programs Division. We learned how to telework and meet virtually. We kept our highly valued products and services open and operational 24 hours, 7 days a week. We onboarded new staff, said goodbye to coworkers who retired or moved on, and mourned the deaths of several colleagues.
Slowly, as we’ve all been emerging from the pandemic shutdown to discover new ways of being, I find my spirits lifting and my eyes looking towards the future with optimism and joy.
Part of this feeling comes from a deep and respectful pride for NLM’s accomplishments over the year, and the role I’ve played in it. Some of it comes from welcoming new children and spouses into my very large family. A lot of it comes from the sense of purposeful living that helped me transform a sense of isolation to an engagement with others to co-create a new future. What I’ve realized is that we never actually know our future, so preparing for the best future we can imagine is probably the smartest strategy.
This year, as I add another digit to the long lists of digits that I’ve already accumulated, I’m preparing for the best future that I can imagine. I’m exercising more, practicing the piano with greater diligence, and spending meaningful time with friends and family. I’m engaging with NLM leadership and staff to envision the future of work and to enhance the inclusivity and diversity of our work environment.
I’ve somehow managed to shake off the sense of gloom and doom and see a future that appears limitless to me—awaiting what I can be bold enough to envision, create, and accomplish. Please join me in celebrating my birthday and stepping into the future.
Well, if you are spending the summer at the NIH, you’ve likely been engaged in one of our many activities designed to access critical data and advance our understanding of the human experience by linking data sets together. Today, we are inviting you to engage in some additional best practices in accessing controlled data in ways that support science and preserve privacy.
In 2020, the NIH Scientific Data Council charged its Working Group for Streamlining Access to Controlled Data to spend a year engaging in dialogue within the NIH and with our extramural colleagues to better understand the experiences of scientists and the strategies that both facilitate and impede access to data. The group also considered where in the research process NIH should inform, engage, and gain consent of participants sufficiently to support science driven by access to controlled datasets.
NIH stores and facilitates access to many datasets, both open and controlled, with the goal of accelerating new discoveries and thereby maximizing taxpayer return on investment in the collection of these datasets. Data derived from humans that are shared through controlled-access mechanisms reflect NIH’s commitment to protect sensitive data and honor the informed consent provided by research participants in NIH-supported studies.
NIH has supported multiple controlled-access data repositories that uphold appropriate data protections for both human data and other sensitive data, while meeting the needs of various researcher communities. However, as data access requests increase, new repositories are established, and new mechanisms of providing access to data are developed, it is apparent that opportunities remain to improve efficiency and harmonization among repositories to make NIH-supported controlled-access data more FAIR: Findable, Accessible, Interoperable, and Reusable and to ensure appropriate oversight when data from different resources are combined. While these trends are enabling datasets and datatypes to be combined in new ways that advance the science, datasets, and datatypes that may or may not be controlled may, when combined, create inadvertent re-identification risks.
To help the agency address these issues in a way that is responsive to community needs, we are hosting a series of webinars through the end of July. We call these “breakout sessions” because they follow an outstanding webinar presented on July 9 available here. Richard Hodes, MD, director of the National Institute on Aging, launched the 3-hour seminar with a talk titled Opportunities for Advancing Research Through Better Access to Controlled Data. Ana Navas-Acien, MD, PhD, brought the perspective of indigenous and communities of people traditionally underrepresented in research, and she emphasized themes of community engagement and broadening the consent framework to consider community-level accountabilities as well as individual assent. Lucila Ohno-Machado, MD, MBA, PhD, addressed privacy preserving distributed analytics as a strategy to promote science while preserving privacy of data. Hoon Cho, PhD, described privacy-enhancing computational approaches to privacy preservation.
You can find the schedule for the breakout sessions below. These sessions are specifically designed to listen to the expectations, hopes, and concerns from researchers and participants. These webinars are free and open to the public; registration is required.
To generate interest and hear from the broadest possible group of stakeholders, NIH has released a Request for Information on Streamlining Access to Controlled Data from NIH Data Repositories. Please note the closing date is August 9. We look forward to hearing from you! Please visit Streamlining Access to Controlled Data at the NIH for all of the information described in this post.
Finally, we would like to personally thank the many NIH staff members who serve on the working group:
Shu Hui Chen
Valentina Di Francesco
Jamie Guidry Auvil
Vivian Ota Wang
I hope your summer vacation was as productive as ours!
Guest post by Dianne Babski, Associate Director for Library Operations and Patrick Casey, NLM Building Engineer
NLM, the largest biomedical library in the world, is housed in Buildings 38 and 38A on the NIH campus in Bethesda, Maryland. As we head into our third century of existence, we are guided by our ten year NLM Strategic Plan, which outlines a vision for NLM as a platform for biomedical discovery and data-powered health, integrating streams of complex and interconnected research outputs that can be readily translated into scientific insights, clinical care, public health practices, and personal wellness.
An important step in realizing this future is to create a physical environment to better position NLM to fulfill the goals of its strategic plan. In Fall 2017, we engaged with NIH facilities management, architects, and historic preservation specialists to explore ways to better utilize our space, support research, and provide a progressive and collaborative work environment. Through an iterative and cooperative process, including engagement with and feedback from our many stakeholders, the needs expressed became the drivers for the recommendations and plans made for the proposed future of NLM.
Little did we know when we embarked on this extensive renovation that the project would take a twist – a global pandemic. In some ways, the pandemic provided an opportunity to recognize the extent of work that could still continue with many staff working remotely.
As we enter the first phase of the renovation project, that involves the Mezzanine level and 1st floor in Building 38, I thought it would be helpful to learn more about the project from the perspective of the person overseeing it – Patrick Casey, NLM’s building engineer. I had an opportunity to sit down with Patrick to ask some questions and get his thoughts on the project.
What have you found most interesting about the NLM renovation compared to other projects you’ve worked on?
The main building was built in the 1950s in a construction fashion that is not done anymore, and it’s a building constructed using a lot of concrete. I’ve heard many stories about the construction of the building, one of which is that it was built as a bomb shelter to enable it to withstand a bomb attack to protect the collections.
What makes the NLM building renovation necessary and distinctive?
This renovation is necessary to make better use of existing space, create new space for growing research programs, ensure the integrity of NLM’s collections, and support the future work of NLM. The breadth of the project is a treat to work on because there is never a shortage of things to do.
All of the various projects at NLM have unique characteristics. NLM facilities house the historical collections, a 24-hour data center, and a 10-story administrative facility supported by several stories below ground.
While the main building was built in the 1950s, Building 38A was added in the 1970s. While newer than the original Library building, Building 38A is also showing its age and “time stamp” from that era of building design.
What have you had to learn as part of this project?
This is NLM’s first major renovation in 50 years, and we’ve had to learn a lot about some of the interesting challenges that exist with the building, including unique climate control concerns that need to be considered and addressed—especially on levels where historical collections are stored.
The project management process is constantly keeping us on our toes because there are a lot of things to plan. We do not typically have much down time.
What are you most excited to see at the end of the renovation?
I look forward to seeing how the new renovation does the building justice in terms of maintaining its unique qualities while providing staff with a modernized, 21st century work environment to facilitate collaboration, and creating a welcoming environment for visitors and patrons. I am excited to see the spaces open and ready for people to use and move into. That said, work will continue after this major renovation project is complete. Building system upgrades needed to improve environmental conditions will continue to be addressed. Tackling these improvements will introduce its own set of challenges, and I look forward to it.
We are very lucky to have an engineer on staff to help NLM oversee these major renovations, keep us informed of what’s going on, and help us continue to modernize and improve our work areas as we build for the vision of our future!
We would love to hear your tips or lessons learned if you went through renovations!
Ms. Babski is responsible for overall management of one of NLM’s largest divisions with more than 450 staff who provide health information services to a global audience of health care professionals, researchers, administrators, students, historians, patients, and the public
Mr. Casey is the NLM Building Engineer. He has worked for the federal government for nearly 19 years. Prior to working at NLM, he worked in various capacities at the Navy and Marine Corps working in facilities renovation and construction programs
About 15 to 20 years ago, in the early days of browsers and websites, colleagues from the University of Washington, led by William Jones, launched a research project called “Keeping Found Things Found.” They interviewed many people to explore what we now call personal information management. You know what this is – it’s how you keep track of your medications, your child’s vaccination record, and your family’s health history. People are amazing at devising clever ways to hold on to personally meaningful and important information – you might even have yours stored in kitchen cupboards, file cabinets, calendars, and even family bibles!
If there’s one thing that libraries do well it’s keeping found things found and making them findable to others. NLM excels at this. NLM has more than 3 million books and journals in our physical collection, millions of genomic sequences in our data banks, and we maintain electronic access to almost 13,000 journals. We’ve also been devising new ways to make our print collection accessible during the COVID-19 pandemic, when access to the NLM building is limited, and preserve the pathways to electronic journals.
One thing NLM is NOT good at is personal health information management—this just isn’t our specialty. NLM funds research to better support people’s abilities to create personal health libraries, but we don’t store personal health information. NLM’s hallmark is acquiring, preserving, and making available for public use scientific knowledge for health as represented in books, journal articles, and data banks. Under special circumstances, we will create ways to collect and archive public information that supports personal health actions that stem from events ranging from the AIDS crisis to the COVID-19 pandemic.
My family and I have also benefited from programs supported by federal libraries to keep the stories of individual people found. In 2005, my son and I participated in an initiative supported by a nonprofit organization to record, preserve, and share a wide variety of stories told by people just like you and me. To prepare for our interview, my then 11-year-old son, Conor, scanned the suggested questions (which he wouldn’t tell me about ahead of time) and ventured off to the mobile studio. It was an amazing experience.
Each storyteller gets about 45 minutes to speak while a sound engineer records the interview on high-quality audio, which is eventually preserved. Participants are offered the opportunity to have their story archived at the Library of Congress and have a portion of their story broadcast over NPR (National Public Radio). Conor and I agreed to both, so we became a part of the many personal stories of the United States. You can listen to the segment broadcast on NPR here.
I loved this whole experience and treasure the sound of my son’s 11-year-old voice. The variety of questions he asked me was surprising, and it gave us a new chance to document our family history. Yet, figuring out what to do with that CD recording over the ensuing decade has been a challenge to me – it’s moved with me three times and is now lodged between two cookbooks on one of my bookshelves – making me grateful that that I have a library and a URL that is helping keep this important thing found.
There are a lot of good reasons why NLM should NOT be the place where personal information is found – privacy, personal control, and the ever-growing trail of records that characterize health care across the life span. The complex mess of papers, pictures, and small books that most of us use to keep track of personal information aren’t amenable to the services of a library, whose goal is to acquire, preserve and promote access by all to a broad range of information. But there are many stories, records, and other notations about our health that individuals need to keep found across their life span. NLM needs your ideas here – should we fund the development of new apps that manage health information? Should we collaborate with electronic health records system companies to urge them to build personal health information resources for their patients? Is this a place where stimulating the business market could help?
I’m grateful that the Library of Congress committed to storing brief encounters between people telling their life stories, but in order to keep my story found, I had to share it with others.
What can we do to keep things found and accessible only to the individual?
On August 13, 2016, I became the first woman, nurse, and industrial engineer to serve as director of the National Library of Medicine (NLM). From its beginning in 1836 as a small collection of books in the library of the U.S. Army Surgeon General’s office, NLM has become a global force in accelerating biomedical discovery and fostering evidence-based practices. I am proud to direct this esteemed organization and delighted to guide it towards its third century beginning in 2036.
This has been an exciting five years for NLM.
We accelerated data-driven discoveries and advanced training in analytics and data science across NIH and around the world. Our genomic resources played a crucial role in supporting NIH and the scientific community’s ability to understand a novel virus and address the COVID-19 pandemic. NLM investigators developed innovative uses of deep learning and artificial intelligence and applied them to a wide range of problems – ranging from interpretation of clinical images to improving search and retrieval of highly relevant citations from NLM’s PubMed biomedical literature database.
NLM pioneered strategies to link data sets to articles through our PubMed Central (PMC) digital archive, and doubled the size of the NLM-supported Network of the National Library of Medicine—reaching almost every congressional district in the United States with the capacity to connect NLM resources to communities in need.
We provided technical expertise to develop a secure single sign-on to a wide range of controlled data resources, and redeployed our research infrastructure to help public health authorities detect foodborne outbreaks and track the emergence of coronavirus variants. We also advanced our use of automated-first indexing to make sure that the published literature is available to our stakeholders as quickly as possible.
With the support and collaboration of other components of NIH, we are building a 21st century digital library that uses our collections to offer literature, data, analytical models, and new approaches to scientific communications that are accessible, sustainable, and available 24 hours a day and 7 days a week.
NLM’s archival collections continue to grow and evolve as the archival records of individuals, organizations, and other communities in health and medicine are increasingly created and communicated electronically or digitally. We expanded the formats and types of records we collect—and make accessible and usable— to include born-digital formats such as websites, social media, and data sets. For example, NLM deployed innovative techniques to prospectively curate and add COVID-19-related information from traditional news, social media, and other sources to our Digital Collections. These collections preserve for future research the ephemeral online record of modern health crises, documenting the work and experiences of health care providers, researchers, government agencies, news agencies, patients, and caregivers.
As a nurse and an industrial engineer specializing in health systems engineering applied to patient self-management, I bring a perspective to NLM that expands its mandate from supporting biomedical researchers and clinical practitioners to one that aggressively supports the health of the nation.
During my tenure, NLM’s footprint has expanded by:
Growing our research enterprise in support of data-driven discovery;
Supporting key priorities of the NIH in data science, access to secure data repositories, and community engagement;
Strengthening the integrity and efficiency of our internal resources to accelerate the acquisition, preservation, and dissemination of biomedical data; and
Expanding our commitment to public outreach and engagement.
Two guiding principles have shaped my work:
I initiated the One NLM concept as an organizing framework during my first year as director of NLM. One NLM creates a rallying point, making explicit that all our offices and divisions work in concert and in support of NLM’s mission. As described in my January 2017 blog post entitled, One NLM:
One NLM emphasizes the integration of all our valuable divisions and services under a single mantle and acknowledges the interdependency and engagement across our programs. Certainly, each of our stellar divisions . . . have important, well-refined missions that will continue to serve science and society into the future. The moniker of One NLM weaves the work of each division into a common whole. Our strategic plan will set forth the direction for all of the National Library of Medicine, building on and augmenting the particular contributions of each division.
Strengthening the NLM Senior Leadership Team
I employ a team model of leadership—engaging the deputy director, four division directors, and four office directors in biweekly meetings. With the support of external consultants, we engaged in a one-year leadership development activity focused on building capacity for joint decision making, improving risk tolerance, and creating an environment that supports trans-NLM collaborative problem solving. I found that continued engagement with individual members and the leadership team established an organizational milieu that led to improved trust in each other. And the team, which held up in good stead during a period of maximum telework in response to COVID-19, ensured the innovative mobilization of NLM resources to help NIH rapidly assume new research programs, respond to public health needs, and most importantly serve as a trusted source of information.
What I’ve Learned
While I remain true to my core values and beliefs, I’m not the same Patti Brennan as I was when I entered the ‘Mezzanine’ floor of NLM’s Building 38 nearly five years ago. I’ve learned to mobilize and reward the talents of the 1,700 people working at NLM to achieve common goals. I figured out how to work with a boss, something few academics ever actually face. I’m better at finding the niche into NIH conversations and policy-setting meetings where the talents of NLM and our deep understanding of data science accelerate NIH’s mission to turn discovery into health. I’ve created space in conversations for the voices of others, particularly the members of my leadership team with whom, I’ve learned, complement my vision and drive with their knowledge and discernment. It’s been a great ride!
How does the you of 2021 compare to the you of 2016?