Promoting Accountability to the Public

One of the most important commitments of NIH leadership is to uphold the public’s trust. Funding for NIH comes through tax dollars appropriated by Congress, and it is expected that NIH will spend these funds in a way that best serves the needs of the public. Within NLM, this means that we allocate our more than $460 million in annual appropriations in a manner that helps us achieve our mission and the vision of our stakeholders. I’ll bet you are wondering how we actually do this!

I am sure that if you asked any one of my 26 peer directors at other NIH Institutes and Centers, you’d get 26 different perspectives. Here’s what guides me and here’s how I live out this commitment.

Demonstrate Responsible Stewardship
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Each and every day, I work to ensure that decisions about investments and support provided by NLM funds are based on data, analysis, and expert review. We devised a portfolio analysis approach to account for the 100+ public-facing products and services that exist across NLM — ranging from PubMed to GenBank to our research programs. This approach has enhanced NLM’s planning and decision-making processes. We document the basis for our decisions using performance data, funding projections, and feedback to assess responsiveness to our stakeholders’ needs. I meet weekly with our budget officer to review trends and directions in expenses and funds. I work closely with NIH leadership to align new initiatives with NIH priorities and to provide accountability in use of funds for our efforts.

Engaging Stakeholders

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The work of NLM is guided by public law and our NLM Strategic Plan 2017-2027. We engaged with more than 100 individuals representing scientists, clinicians, public health specialists, patients, and patient advocates in the development of our strategic plan. Our congressional authorization charges NLM to acquire, organize, preserve, publish, and make available information related to biology and the health sciences, including medicine, nursing, public health, psychology, and other related sciences, to support research and public health.

We are committed to serving scientists and society. NLM uses a variety of mechanisms to engage with our stakeholders through workshops and materials such as those available through NLM’s ClinicalTrials.gov, requests for information, and public meetings with our NLM Board of Regents. We report to Congress by detailing how we have spent the previous year’s funds and provide a vision of the bright future anticipated in the upcoming year through the annual process to develop our Congressional Budget Justification as part of the development of the President’s Budget request.  

Soliciting Guidance

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I have written several times about the leadership model I use to guide our actions at NLM. My leadership team includes the Deputy Director, Executive Officer, and Scientific Director, and the directors of our four key divisions (the National Center for Biotechnology Information, Library Operations, Extramural Programs, and the Lister Hill National Center for Biomedical Communications) and four operating offices (Office of Computer and Communications Systems, Office of Communications and Public Liaison, Office of Strategic Initiatives, and Office of Administration).

We meet biweekly as a team and in smaller groups as needed. We review budget planning principles, discuss major initiatives (such as the renovation of our buildings), and management of expenditures. I rely on this group’s experience to bring forward new initiatives and to inform the direction of NLM through the lens of their divisions, offices, and responsibilities. I’ve learned that it is critical to be clear with our leadership team whether my intent is to seek consultation or delegate decisions to the larger group.

NLM prides itself on being a trusted source of health information for the nation and the world. One component of trust is promoting accountability for the funds entrusted to NLM in support of our mission. Let me know how we can continue to merit your trust!

 

Using Comparative Genomics to Advance Scientific Discoveries

Guest post by Valerie Schneider, PhD, staff scientist at the National Library of Medicine’s National Center for Biotechnology Information, National Institutes of Health.

In a post from earlier this year, A Journey to Spur Innovation and Discovery, I shared news of an exciting NIH-supported NLM initiative, now known as the NIH Comparative Genomics Resource (CGR). CGR, which supports eukaryotic organisms, is modernizing NIH resources and infrastructure to support research involving non-human organisms. This initiative will improve the data foundational to analyses that rely on comparisons of diverse genomes in NLM databases, increase its connectivity to related content, and facilitate the discovery and retrieval of this information. Just as researchers look to the data from these organisms to teach them about a wide range of fundamental biological processes underpinning human health, NLM relies on the research community to help inform the development and delivery of organism-agnostic core tools and interfaces for CGR so that it can best support these analyses.

Stakeholder feedback and engagement is central to the vision and ethos of the NLM Strategic Plan 2017-2027. Since the plan’s inception, NLM enterprises undertaken in support of our three primary goals have placed heavy emphasis on community connections in both their planning and execution. Likewise, understanding stakeholder needs is a fundamental element of CGR. With more than 19,000 genomes from over 8,500 species (excluding bacteria and viruses) found in our Assembly database, it’s clear that CGR’s user base will hail from a large and diverse collection of research organism communities. Within each community, there is diversity in the role CGR will play due to variability in the amount of genomic sequence available, as well as the existence of organism-specific data resources, such as community knowledge bases. Data consumers, themselves, are a heterogeneous population and represent different levels of research interests, education, bioinformatics expertise, and analysis needs.

CGR is using a multi-tiered and multi-faceted approach to ensure stakeholder requirements are understood and appropriately prioritized throughout the project duration. CGR is working to identify community-supplied genome-related data that can be integrated to enhance content supplied by NLM. Two governance bodies are playing important roles in this effort. A trans-NIH CGR steering committee provides strategic oversight by guiding CGR with respect to the priorities of NIH institutional stakeholders, and an NLM Board of Regents CGR working group is charged with helping engage with the scientific community and enlist them as partners in the development effort. Working group members have expertise in topics relevant to the CGR initiative, such as comparative genomic analysis, emerging large-scale genomics approaches, organism-centered research into general biological or disease processes, biological education, and workforce development.

We are developing a presence for CGR at scientific conferences and workshops to encourage partnerships with members of research communities and connect with attendees. A CGR-related talk given at the BioDiversity Genomics 2021 conference in September introduced a new cloud-based tool for improving genomic quality to be released in 2022 and identified researchers to serve as beta testers. Additional targeted outreach will be held independent of conferences to gather feedback and inform development.

The CGR project utilizes an iterative development process in which user testing is an integral element. Feedback gathered through these testing exercises is incorporated into the next development cycle. This approach ensures we remain engaged with the CGR target audience throughout the project by understanding their needs and providing a resource that is valuable to their research pursuits. For example, recent user testing of a prototype Basic Local Alignment Search Tool (BLAST) database engineered to support sequence queries seeking a broad distribution of organisms in the results taught us about other content that will need to be provided for proper interpretation of results.

NLM is poised to learn great things from our users as part of the CGR project. You can learn more about engagement opportunities by contacting us at info@ncbi.nlm.nih.gov. We value your input as we continue this journey together.

Valerie Schneider, PhD, is the deputy director of Sequence Offerings and the head of the Sequence Plus program. In these roles, she coordinates efforts associated with the curation, enhancement, and organization of sequence data, as well as oversees tools and resources that enable the public to access, analyze, and visualize biomedical data. She also manages NCBI’s involvement in the Genome Reference Consortium, the international collaboration tasked with maintaining the value of the human reference genome assembly.

Every End has a New Beginning

Last week Francis Collins, MD, PhD, announced his plans to step down as the Director of the National Institutes of Health after serving in this position for 12 years. Francis is a force of nature — a tall man with a gigantic vision of how science can serve and improve society. I could recount for you the many ways Francis and his wife, Diane Baker, enhanced NIH.

It was Francis’ vision to establish the National Center for Advancing Translational Sciences at NIH, launch the All of Us Research Program – uniting one million people throughout the United States to advance science through the study of everyday health, and mobilize NIH and a network of partners to mount an effective campaign against the COVID-19 pandemic. Blending his scientific expertise with a deep love for music, Francis launched the Sound Health Initiative between NIH and the John F. Kennedy Center for the Performing Arts, in association with the National Endowment for the Arts, to bring together neuroscience and music to explore the potential for music to treat a wide range of conditions resulting from neurological and other disorders. 

Diane made it her mission to be sure that the children, patients, and families who came to the NIH Clinical Center for with hopes of life-saving therapeutics felt the support of the entire NIH community. Whether it was mobilizing volunteers to cook a Sunday dinner for families at The Children’s Inn at NIH or organizing fundraisers to provide free lodging and support for families whose children were undergoing treatment, Diane was there. Personally, Diane reached out to me when I arrived at NIH and encouraged me to find ways NLM could enhance its support to patients and families. This very invitation led to some wonderful connections that resulted in making NLM’s resources more valuable to more people.

Francis taught me what it means to have a boss with passion and vision. His personal engagement with data science and molecular biology made him keenly aware of the value of NLM’s mission to advance science. He listened carefully as NLM leadership made a case for modernizing our important resources that support broad access to genomic data and enable researchers, clinicians, patients, and the public find clinical trials information. Francis had a knack for putting NIH Institute and Center directors in front to tell the story of NIH’s accomplishments to Congress and the public. It is this very strategy that helped me recognize that the best spokespeople for NLM are those leaders who provide our services every single day.

We are at the dawning of a new era — for Francis and Diane, for NIH, and for NLM. Francis is not leaving NIH – he will continue to lead his research laboratory at the National Human Genome Research Institute, with a focus on the genomic basis for diseases such as type 2 diabetes. I am sure Diane’s passion for public service will continue to find new expressions.

Under new leadership, NIH will grow in new ways that I know will be grounded in our decades of accomplishments in understanding the basic mechanisms of disease, mobilizing research to improve public health, and data-driven discovery. NIH will persist in its commitment to advance health equity while addressing structural racism. NLM will continue to expand its investments in scientific communication, large-scale data resources, and the network needed to be sure that the opportunities and benefits of science reach people in communities across the country through our Network of the National Library of Medicine.

I send my best wishes to Francis and Diane with my deepest respect, gratitude for your support of the NLM and its mission, heartfelt thanks for what you have taught me, and a great blessing of the Irish:

May the blessings of each day
Be the blessings you need most
.

– Irish Proverb

THANK YOU, FRANCIS!

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!

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