Perhaps the most famous NIH staffer right now is Anthony Fauci, MD, Director of the National Institute of Allergy and Infectious Diseases (NIAID), and one of the leading voices throughout the COVID-19 pandemic. Prepared by more than 50 years of government service and research on infectious diseases, Dr. Fauci is a public servant who brings reason, expertise, and a keen sense of how to mobilize the public health sector to act against this unprecedented threat to public health.
Like many others around the country and the world, my family and I think of Dr. Fauci as “our doctor.” He speaks to us, giving a personal response to ensure the public’s health. He understands the challenges of having family at a distance during times when travel and family gatherings are discouraged to reduce the spread of infection. He shares the joys of those reunions—full of hugs from family and friends—so long missed. It’s amazing to me that Dr. Fauci has been able to convey such warmth and concern to the world and be the deliverer of trusted knowledge in such a personal manner. More than once, conversation at a family dinner or on a family phone call has included the question, “But what does Dr. Fauci think about . . .?” followed by heartfelt wishes of gratitude from my mother and siblings!
I am privileged to be part of the NIH leadership team who meets weekly to advance the mission of the world’s largest research enterprise. While we address wide ranging issues from advancing biomedical science to NIH infrastructure and operations, discussions about NIH’s response to the COVID-19 pandemic still dominate. Like others, I find Tony a wise and experienced colleague, thoughtful in his contributions, and quick to bring a sometimes much-needed touch of humor into complicated conversations. I marvel at his stamina and the breadth of issues that engage his mind.
Tony Fauci has built a superb team of scientists, clinicians, and administrators within NIAID. The dedication and intellectual generosity evident in his contributions to our efforts are evident across NIAID – clearly an inspirational leader motivates and inspires!
So please join me in expressing gratitude to my colleague, Tony Fauci – a national treasure!
Part 1 of a series discussing the importance of imagination.
Everyone is talking about the “new normal” now — the post-pandemic space after we return to the physical location of work, school or play— and asking, what will life be like? There are many calls for innovative thinking. One of the best things about a library is that it provides a foundation for innovation, but building the pathway between great science, good ideas, and innovative products and services takes imagination. NLM is a springboard for innovation in health care, from describing previously not-well-understood biological processes to creating new drugs and therapeutics. Even taking the leap from this springboard requires imagination!
Imagination is a process of the mind somewhere between cognition, recall, and play, that allows a person to create novel ideas, sensations, and visualizations. Somewhere between play and wool-gathering, imagination is the capacity of an individual to conjure up ideas that can be pleasing or frightening, phantasmagoric or peaceful. Sometimes the experience of imagination is a self-contained pleasure; other times it becomes a catalyst for new ways of living or new products and services that can help the public in different ways.
Imagination is the starting point for innovation. It stimulates innovation through the experience of a mental what-if, unconstrained by the realities of physics or finance. Imagination is a talent that can be learned and refined over time, benefiting from the reinforcement of envisioning that which might be, and using that vision as a test case for that which can be. Everyone can exercise imagination, and through this practice, make the world around them a better place!
Nurses are pretty good at applying imagination to complex patient care situations. Take, for example, Marie Van Brittan Brown an African American nurse living in the Jamaica neighborhood in the New York City borough of Queens. In the early 1960s, she and her husband Albert, an electronics technician, imagined a way to help people feel and be safe in their homes.
Figure 1: Diagram of the original 1966 patent request filed by Marie Van Brittan Brown and Albert L. Brown courtesy of the U.S. Patent and Trademark Office.
Being and feeling safe at home is particularly important for homebound individuals. Many homebound individuals live alone and are isolated. They may lack the physical ability or strength to investigate a strange sound outside or answer a ringing doorbell. Ms. Brown and her husband imagined that homebound people would feel safer at home if they had a way to see through the front door and interrogate a visitor and, if necessary, activate an alarm to alert the police that help was needed. Envisioning a set of peepholes, microphones, and a closed-circuit television, they created the first modern home security system. A monitor installed in the home or bedroom of the resident allowed ease of viewing and enabled the resident to speak to someone outside the door. Ms. Brown and her husband were awarded a patent in 1969 for this system.
Like many people who use imagination to stimulate innovation, Ms. Brown found herself far ahead of her time. In the 1960s, closed circuit TV was considered a military application, and home builders found the cost of the system to be too high. However, having the forethought to register their design and seek a patent, they provided the “prior art” that later stimulated over 30 patents.
What helps build the pathway from science to imagination to innovation begins with an idea that addresses an important problem. Imagination complements science, making it possible to see what science enables. Achieving the full promise of innovation again requires a dose of science because leveraging what is already known to what could possibly be is what brings an imagined future into an innovative reality. It takes imagination to sketch out a future, and even more imagination to find (or build) the elements needed to make that future real.
NLM stands as a partner in your imaginative journey. Keep practicing and let us know how we can help you innovate the future you can imagine!
Of all the wonderful signs and sounds heralding a change in the response to the COVID-19 pandemic, none is more welcome than the news that public libraries are reopening. If you, like me, remember spending hot summer afternoons in the cool, air-conditioned library, this mid-summer news may bring a smile to your face. For me, as NLM director, this means that NLM will once again have another pathway to help people all over the country access the resources of NLM from their community library.
Working in libraries “feels like home,” Mishael Gis, 28 [a patron], told me. She was using a computer for taxes and research. The scene felt like a homecoming.
Michael Rios, 45, a librarian for children, has spent the pandemic helping readers remotely. But what he likes is helping kids find the unexpected: “I help people search, physically. That’s the part that speaks to me. So, this is great. Huge.”
NLM has a special relationship with public libraries. Many public libraries are members of our Network of the National Library of Medicine (NNLM) and have access to, through NNLM’s seven Regional Medical Libraries, specialized training and resources that enable patrons to tap into the resources and knowledge base of NLM. As members of the NNLM, staff of those libraries have access to hundreds of courses and learning resources provided at no cost, bringing new knowledge about data science and communicating health information to a wide range of audiences.
Public libraries also provide NLM with a ‘finger on the pulse’ of communities around the nation. This helps us understand what kinds of health information are most valued and how to best deliver it.
NLM’s relationship with public libraries supports NIH and provides a mutually beneficial way to leverage partnerships around the country and bring information and opportunities about NIH research programs into communities. For more than 5 years, our NNLM has partnered with NIH’s All of Us Research Program to provide community-based information about participating in this ambitious effort. All of Us is building a diverse community of more than 1 million participants across the country to help researchers learn more about how genetics, environment, and lifestyles affect individuals’ health, especially those in communities who have historically been excluded from large-scale research programs. During the COVID-19 pandemic, the NNLM also partnered with the NIH Community Engagement Alliance (CEAL) Against COVID-19 Disparities to use community-engaged strategies to reduce the burden of COVID-19 among communities disproportionately affected.
Come celebrate with me! The public libraries are opening! The public libraries are opening!
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!