Pursuing Data-Driven Responses to Public Health Threats

In my 11th grade civics class, I learned about how a bill becomes a law, and I‘ll bet some of you can even remember the steps. Today, I want to introduce you to another way that the federal government takes actions – executive orders. As head of the executive branch, the president can issue an executive order to manage operations of the federal government.

In light of the COVID-19 pandemic, President Biden has issued executive orders to accelerate the country’s ability to respond to public health threats.

This is where I come in. As Director of the National Library of Medicine (NLM) and a member of the leadership team of the National Institutes of Health, I’m part of a group developing the implementation plan for the Executive Order entitled Ensuring a Data-Driven Response to COVID-19 and Future High-Consequence Public Health Threats.

This order directs the heads of all executive departments and agencies to work on COVID-19 and pandemic-related data issues. This includes making data that is relevant to high-consequence public health threats accessible to everyone, reviewing existing public health data systems to issue recommendations for addressing areas for improvement, and reviewing the workforce capacity for advanced information technology and data management. And, like all good government work, a report summarizing findings and providing recommendations will be issued.

Since March 2021, I have been meeting 2 to 3 times a month with public health and health data experts across the U.S. Department of Health & Human Services (HHS). Our committee includes staff from the Office of the National Coordinator for Health Information Technology, Food and Drug Administration, Centers for Disease Control and Prevention, Centers for Medicare & Medicaid Services, and Office of the Assistant Secretary for Planning and Evaluation.

After creating a work plan, our group arranged briefings with many other groups, including public health officials from states and territories, representatives from major health care systems, and the public, among others. We reviewed many initiatives to promote open data, data sharing, and data protection across the government sphere. We learned about the challenges of developing and adopting data standards, and the ability of different groups to come together to make data more useful in preparing the country to anticipate and respond to high-consequence public health threats. We discussed future strategies for data management and data protection, new analytical models, and workforce development initiatives. Our working group provided a report to the Office of Science and Technology Policy (OSTP), handing it off to the next team who will take the work process and keep moving it toward completion. In coordination with the National Science and Technology Council, OSTP will develop a plan for advancing innovation in public health data and analytics.

This was a beneficial experience for me, and I certainly learned a great deal. Implementing a public health response system requires engagement with many HHS divisions, each of which brings a unique perspective and experience. I also developed new relationships based on trust and collaboration with these colleagues. At NLM, we have experts in data standards and data collection, and we oversee vast data repositories, so we have substantial domain-specific knowledge to contribute. I drew frequently on the knowledge and expertise of NLM staff to inform the process through analyses of information and the preparation of reports. I am grateful for all who helped and supported me.

I believe our country is prepared to have the data necessary to prevent, detect, and respond to future high-consequence public health threats. This is yet another way that NLM is helping shape data-powered health for the future. What else can we do for you?

Imagination: A Process. Not a Moment

Part 3 of a three-part series discussing the importance of imagination. Part 1 is here and part 2 is here.

Over the past two months, I’ve been sharing my ideas about the importance of cultivating imagination to stimulate innovation. Most of this is great fun, and I hope I’ve enticed you to do some of your own daydreaming, and maybe you’ve begun to see some of the impact in your own efforts. Imagination – the ability to envision that which has never been seen, heard, or experienced – is pleasurable, and adds collateral benefits, such as a reduced tendency to interpret unfamiliar stimuli as a threat, and an improved ability to generate novel solutions on the fly. Imagination doesn’t have to end with an inspirational idea. In this post, I’m encouraging you to consider imagination as a partner to help you implement those inspirational ideas and sustain their impact.

Take a look with me through the lens of imagination to see the impact that your imagination can have on the future of technology. Learn how NLM fosters this creative process and how we continue to support health care innovation with our tools and services.

As I reflect on my five years as the NLM Director, I realize that the most important contribution I can make to NLM extends beyond the generation of new ideas. It’s about building in the financial and human resources, as well as the processes to sustain the change envisioned through those new ideas. I need to share my vision with my leadership team and listen to the ideas of our NLM staff. To do this, I need to stimulate imagination in those around me. Novel ideas must also be evaluated for their fit with NLM’s mission. From there, we can create an implementation pathway, identify responsible parties, and develop a plan of action. Along the way, anticipated and unanticipated glitches may occur, and may require that we take a step back, revise, or recommit to the plan. Eventually, streams of ideas become programs that we sustain or sunset; new opportunities abound, and the process starts over again.

Imagination is my companion.  Cultivating my own imagination improves my ability to learn from others whose world views differ from my own, recognizing the difference not as a threat, but as an alternative. Imagination helps me envision a range of future states, conducting the mental ‘what if we did . . . .’ exercise and engaging others to join me in that exercise. Imagination-fueled innovation helps me determine whether a lack of ‘fit for the mission’ heralds a need to re-think the innovative idea or a recognition that we must re-examine our mission. And building the skill of imagination augments my practical problem-solving skills so that anticipated and unanticipated glitches can be addressed with creative strategies. Finally, imagination contributes to my (and others) abilities to foresee a future without a familiar and much beloved program, as well as one in which a fledgling program becomes a sustainable core of our enterprise.

One of the practical ways we built the capacity for sustaining innovation into the fabric of NLM was through the creation of the NLM Strategic Plan Implementation Council, led by Mike Huerta, PhD, Director of the Office of Strategic Initiatives and Associate Director of the National Library of Medicine. Mike led the development of the NLM Strategic Plan 2017-2027 and leads our ongoing evaluation of the plan and its implementation. But he doesn’t do this alone – he convened a group of 18 staff from across all divisions and all levels within NLM. Once a month this council meets and gathers information from all areas of NLM regarding how the Strategic Plan is guiding our work. The council systematically examines new projects, raises considerations about modifications that may make the plan more useful to us, and provides a forum for ensuring that the cool ideas envisioned in the Strategic Plan realize their full potential for NLM.

When I began this exploration of imagination and innovation, I found myself focused on the spark, the new idea, the act of innovation. As I have reflected over the weeks, highly engaged with my leadership team in a wide range of efforts addressing our core mission and positioning us towards the future, I realized that imagination unaccompanied by strategies of sustainability was foolhardy for the director of a large organization. Yet still, the move from fostering innovation to sustaining innovation does not require one to abandon the effort to imagine; it requires a continuous refreshing of imagination. This leads not only to the initial innovation but to the myriad steps needed to guide the innovation towards its full contribution.  

So – don’t fear that the value of cultivating imagination ends once the inaugural innovation is envisioned – you’ll need that skill all along the journey!

Investing in a Sustained Partnership: A Data-Driven Human Approach to Social Justice and Equity

Guest post by Patricia Matthews-Juarez, PhD, Chair of the Environmental Health Information Partnership (EnHIP) and Rueben C. Warren, DDS, MPH, DrPH, MDIV, Scientific Advisor for EnHIP

In 1989, after many successful years of developing scientific and technical databases, the National Library of Medicine (NLM) started its first long-term outreach plan to train health professionals how to use NLM’s suite of digital tools. While these efforts helped large medical schools and hospital centers, institutions comprised of substantial minority populations struggled to maintain access to online databases and keep up with rapidly evolving technologies.

As a result, NLM sponsored a one-year pilot project to increase the capacity of historically black colleges and universities (HBCUs), Hispanic-serving institutions, minority-serving institutions, and tribal colleges to access NLM’s toxicological and chemical databases. This program was designed not only to benefit the institutions, but also to investigate environmental toxins commonly found in minority and socio-economically disadvantaged communities, particularly in the southern United States. In 1991, the pilot project grew into a partnership called the Environmental Health Information Partnership (EnHIP).

EnHIP unites heads of the various universities and colleges with NLM leadership and staff. In addition to examining environmental hazards, this program also calculates the impact of hazardous waste on the lives of African Americans using data, technology, and scientific resources.

This single investment made more than 30 years ago to strengthen the capacity of HBCUs resulted in a tremendous payback in terms of education and research. As NLM and EnHIP have evolved, so have the demands for access to complex technology that capture and interpret data as a pathway to scientific explorations, interventions, research endeavors, and discoveries. The return on investment is the systemic organizational change at the member schools of EnHIP and listening channels at NLM. These opportunities create community-based projects in local communities and enhance the capacity of EnHIP member institutions to reduce health disparities in ways never imagined. These opportunities, driven by consistent investments from NLM, are linked to the practice and process of social justice and fairness, trustworthiness, and truth telling.

NLM continues to bring high standards and innovative ideas to the acquisition and management of biomedical data as scientists unravel the impact of the social determinants of health, health disparities, and health equity. The NIH UNITE initiative to end structural racism offers new opportunities to invest in equitable research and determine how data is collected, managed, and accessed with justice and equality in mind. Three decades of collaboration in data science, open access publications, and community/citizen science are paying off. Shared values and networks have been amplified at the international, national, regional, state, and local levels, and across populations. Years of consistently shared and common agendas have led to a strong and effective partnership with the current participating 23 HBCUs, Hispanic-serving institutions, minority-serving institutions, and tribal colleges. These dividends of trust, open communication, and transparency are reflected in the success of our nation in its efforts to reach for equity in science, education, and service.

Dr. Matthews-Juarez is the Senior Vice President for Strategic Initiatives and Innovation and Professor in the Department of Family and Community Medicine at Meharry Medical College. Her work focuses on the social determinants of health, health disparities, and equity in primary care education and community engagement in both the United States and Africa.

Dr. Warren is Director of the National Center for Bioethics in Research and Health Care and Professor at Tuskegee University. He previously served as Associate Director for Minority Health and Associate Director for Environment Justice at the Centers for Disease Control and Prevention and Director of Infrastructure Development at the NIH National Institute on Minority Health and Health Disparities

Innovation through Imagination — Envisioning the Future of Technology-Supported Care

Part 2 of a three-part series discussing the importance of imagination.

I’ve been thinking a lot about imagination lately and how essential it is for stimulating innovative approaches to complex problems. We need innovation in health information technology (health IT) now more than ever with what we’ve been through — a global pandemic, rising calls for eliminating racial biases that contribute to health disparities, wildfires, and other perils. Imagination (the ability to envision what one has never seen, experienced, or heard about) helps transfer the recognition of the power and importance of medical informatics into real innovations that can improve the care of patients and reduce clinician burden.

Enormous patient needs for rapid diagnosis and treatment of unfamiliar and unpredictable diseases increasingly tax an overburdened health care system. Biomedical informatics professionals need to rise to the challenge of systems redesign, new architectures that account for distributed data structures, and the almost insatiable need for information in the moment — decision support under immense urgency and uncertainty. I believe that these new challenges require new ways of action.

In a previous blog post, I encouraged nurses to develop the skill of imagination because 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. 

Imagination expands the human repertoire of planning skills, moving beyond reflexive action and problem solving. Reflexive thought may lead to speedy solutions, and effective problem solving may contribute creative solutions that are responsive to identified constraints. I believe we need to meet tomorrow’s challenges now with solutions that will work into the future – a future that is likely to continue to be characterized by uncertainty and urgency. The future calls for creativity to stimulate innovation through imagination. Imagination may hold the key to devising biomedical informatics solutions that are rigorous enough to be relied upon in life-threatening situations, and robust enough to accommodate team approaches to unpredictable needs for innovative care strategies.

Philosopher Edward Casey recognized two types of imagination: spontaneous and controlled. Both are mental activities, engaging our active consciousness. Spontaneous imagination is characterized by surprise and instantaneity, like the playful stories of children or mental woolgathering while sitting in a beautiful garden. Controlled imagination is a purposeful strategy in which you focus on a specific idea or concept, and use mental powers of reasoning and forethought to anticipate future scenarios. While both types of imagination are important for effective design for biomedical informatics innovation, I am encouraging my colleagues to pay particular attention to growing their capacity for spontaneous imagination.

How does one grow the capacity for spontaneous imagination?

Contrary to the fast-paced, ‘get-it-done’ mindset that has characterized much of past years health IT efforts, a measured, slower pace is needed to create the right conditions for spontaneous imagination to emerge. This means intentionally setting aside time, short or long (without distractions or commitments) and placing yourself in a pleasant environment. It’s not necessary to come to this moment with a specific knotty problem or challenge to think through. In fact, such thoughts are likely to hamper the generation of spontaneous ideas. Spontaneous thoughts that may see far removed from your daily pursuits hold great value in training your mind to attend to new ideas and new fascinations. Avoid appraisals and self-criticism – there are many ways to train our mind to be attentive and aware, and setting aside time, perhaps 2-3 times a week, to just let your mind wander is a great start.

Why am I encouraging what sounds like new-age mantras during a time when we need solutions FAST? I am convinced by the research that cultivating open-ended periods of imagination complements already well-honed mental skills of planning and design. Opening your mind to better connect with what feels creative and interesting increases confidence in judgments about what is relevant in a situation. There is some evidence that spontaneous imagination evokes mental processes similar to meditation and results in improved problem solving and creative solution generation. Noted economist, Daniel Kahneman, advocates that decision makers balance the human tendency to think fast with deliberately thinking slowly to make better decisions. Developing the skill of spontaneous imagination is one way to improve one’s ability to think slow.

Fueling innovation through imagination will improve your ability to recognize nuances and triggers in situations, avoiding the pitfalls of reflexive thinking and expanding the design space. Imagination helps the innovator consider “what if . . .” rather than “how to”— defining the future state before designing the pathway to get there and illuminating consequences not previously recognized. Cultivating imagination increases one’s ability to tolerate uncertainty, resisting the impulse towards premature closure, and settling for adequate but potentially less-than-optimal solutions.

NLM does many things to help cultivate imagination-fueled innovation. We provide access to inspirational literature, and through effective use of the features of the My NCBI tool, you can customize your experience based on previous search interests and receive alerts when related articles appear in the biomedical literature. We fund research to discover new ways to help clinicians envision patients’ response to therapeutics. This includes the work of Antonina Mitrofanova, who is developing and sharing, through a web portal, a bioinformatics analytics system that identifies therapeutic resistance and predicts patients at risk of treatment failure. We promote open access to scientific data through our vast genomic and molecular databases, including our Sequence Read Archive, now freely available through commercial cloud services. And, through our Network of the National Library of Medicine, we work to connect communities around the country to research opportunities and trusted health information.

Imagination-fueled innovation will accelerate the design and deployment of biomedical informatics solutions to the challenges of responding to patient needs under increasingly unpredictable and demanding situations, from pandemics to natural disasters. Let’s partner with you to cultivate imagination and be the innovator only you can be!

What Did You Do with Your Summer Vacation?

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.

Breakout Session on “Making Controlled-Access Data Readily Findable and Accessible” on July 22 from 3 pm to 5:30 pm EST

Breakout Session on “General Opportunities for Streamlining Access to Controlled Data” on July 26 from 12:30 pm to 2 pm EST

Breakout Session on “Addressing Oversight, Governance, and Privacy Issues in Linking Controlled Access Data from Different Resources” on July 28 from 3 pm to 5:30 pm EST

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
  • Alicia Chou
  • Valentina Di Francesco
  • Greg Farber
  • Jamie Guidry Auvil
  • Nicole Garbarini
  • Lyric Jorgenson
  • Punam Mathur
  • Vivian Ota Wang
  • Jonathan Pollock
  • Rebecca Rodriguez
  • Alex Rosenthal
  • Steve Sherry
  • Julia Slutsman
  • Erin Walker
  • Alison Yao

I hope your summer vacation was as productive as ours!

(left to right)
Patricia Flatley Brennan, RN, PhD, NLM Director
Susan Gregurick, PhD, Associate Director for Data Science at NIH
Hilary S. Leeds, JD, Senior Health Science Policy Analyst for the Office of Science Policy at NIH