From Shared Horizons to Impactful Collaboration and Engagement: The Interagency Partnership of the National Endowment for the Humanities/National Library of Medicine, 2012–2024

Abstract

In 2012, leaders in the National Endowment for the Humanities (NEH) and the National Library of Medicine (NLM) established an interagency partnership to collaborate on research, education, and career initiatives located at the intersection of biomedical and humanities research.¹ Shortly thereafter, the agencies joined with the Maryland Institute for Technology in the Humanities and Research Councils UK (now known as UK Research and Innovation) to convene the symposium Shared Horizons: Data, Biomedicine, and the Digital Humanities.² Researchers Erez Aiden and Jean-Baptiste Michel praised the symposium for “betray[ing] an astonishing optimism: the idea that historians and philosophers and artists and doctors and biologists, thinking about data together, can advance their individual causes better than any of them can alone.” Aiden and Michael continued “The conference title…was dead-on. At the interface of all our work lies the most exciting terrain in our intellectual future” (206–7).³ Ten years on, the NEH-NLM interagency partnership has catalyzed and facilitated joint leadership yielding multiple collaborations, engagements, public programs, and open access publications involving dozens of individuals and touching thousands more. At every turn these initiatives have advanced the complementary missions of the NEH and the NLM, including their commitment to open access publishing, as defined by UNESCO to be “the provision of free access to peer reviewed, scholarly and research information to all,… requir[ing] that the rights holder grants worldwide irrevocable right of access to copy, use, distribute, transmit, and make derivative works in any format for any lawful activities with proper attribution to the original author.”⁴ This article takes stock of the NEH-NLM interagency partnership, conveying its impact on and relevance to the public service of both agencies. As discussed, the NEH-NLM partnership advances a “whole of society approach” toward improving individual and public health writ large: not only in terms of connecting lab, clinic, and community, but also more broadly in terms of supporting the dissemination of trusted health information and sharing knowledge about the human condition across time and place and as studied by a variety of disciplines ranging from the sciences to the social sciences to the humanities. The partnership also advances a “whole of government” approach toward making government more efficient, transparent, accessible, and impactful through outcomes that are not possible when working in isolation. Examining a decade-plus history demonstrating leadership, management, and mutual support among public sector colleagues, this article points to fundamental lessons learned to help achieve “whole of government” activities in other contexts for the greater good.

Introduction

As the world’s largest biomedical library, the National Library of Medicine (NLM), part of the National Institutes of Health (NIH), has long been a supporter of research and learning in medical-related science, technology, engineering, and mathematics (STEM). In 2012, the NLM formalized an interagency partnership with the National Endowment for the Humanities (NEH) to develop initiatives that explore the intersection of biomedical and humanities research, bringing together scholars, scientists, librarians, archivists, curators, technical information specialists, healthcare professionals, cultural heritage professionals, and others in the humanities and biomedical communities to share expertise and develop new research agendas.⁵ Intentionally, this collaboration sought to operationalize a “whole of society approach” toward improving individual and public health writ large: not only in terms of connecting lab, clinic, and community, but also more broadly in terms of supporting the dissemination of trusted health information and sharing knowledge about the human condition across time and place and as studied by a variety of disciplines ranging from the sciences to the social sciences to the humanities.⁶ Perhaps unintentionally at the time, this collaboration coalesced into a model for a “whole of government” partnership, in which the NEH and NLM sought to expand their public service at the intersection of public health and the humanities in ways that neither agency could successfully tackle on its own.⁷

While definitions for “whole of government” are not universally agreed upon in the scholarship, Aoki, Tay, and Rawat provide perhaps the clearest outline of this governance arrangement as one that involves ”(i) an organ of the government and (ii) more than one group entity such as a department or organization.”⁸ Working in tandem, the NEH and the NLM combined the leadership, resources, and mission of their organizations to address shared goals in public health and public health knowledge. Using information reflecting a dozen years of interagency cooperation, we analyze how the NEH-NLM interagency partnership has catalyzed and facilitated multiple research collaborations, public programs, and publications, at every turn advancing the complementary missions of the NEH and the NLM. Particularly for the NLM, this interagency partnership—and its underpinning interagency leadership—has increased, expanded, and strengthened its outreach and engagement with traditionally disparate scholarly and public communities, and contributed measurably to advancing research and education in the medical and digital humanities. The original memorandum of understanding, signed by NEH and NLM leadership in June 2012 and reaffirmed approximately every three years since then, highlights three main goals: exploring mutual research interests supporting the dissemination of trusted health information while sharing cross-disciplinary knowledge about the human condition across time and place; developing training, scholarly, and educational opportunities; and supporting professional and career development to increase students’ access to health and medical careers.⁹ The NEH-NLM interagency partnership has consistently centered on these broad goals, advancing the agencies’ respective missions in the spirit and practice of “whole of government” leadership by achieving a variety of focused projects, public programs, and research initiatives benefitting researchers from a variety of disciplines.

Shared Horizons: “Betray[ing] an Astonishing Optimism”

The 2013 conference Shared Horizons: Data, Biomedicine, and the Digital Humanities marked the first joint announcement of the NEH-NLM interagency partnership, coming just two months after the leaders of both agencies signed the interagency memorandum. This international and interdisciplinary conference, co-sponsored with the Maryland Institute for Technology in the Humanities and Research Councils UK, was a unique forum designed to bring together researchers in the fields of the digital humanities and bioinformatics.¹⁰ A dozen sessions and lectures placed historians and computer scientists in conversation with biomedical researchers, librarians, and members of the public. Through sessions including “With a Wild Surmise: Intimations of Computational Biology in Keats, Carroll, and Joyce” and “Common Design Strategies for Exploring Intellectual Geographies in History and Cell Motility in Biology,” Shared Horizons brought together disparate topics such as textual mining, epidemiology, literary analysis, computer science, data analytics, and microbiology. At the heart of it all was a “whole of society approach” which Erez Aiden and Jean-Baptiste Michel later praised as “betray[ing] an astonishing optimism: the idea that historians and philosophers and artists and doctors and biologists, thinking about data together, can advance their individual causes better than any of them can alone.”¹¹

The conference itself was relatively small: 38 scholars of a variety of disciplines participated in the individual sessions, along with approximately 100 additional attendees who joined the program for the keynote address.¹² Occurring solely in-person at a time when widespread video streaming of conferences was in its infancy, Shared Horizons might initially be mistaken as a moderate point-in-time success with little lasting impact on the long-term mission of the NLM. To the contrary, Shared Horizons represented what Paul Voosen (2013) aptly described as “the beginning of a beautiful friendship,” an innovative interdisciplinary partnership between the sciences and the humanities.¹³ Indeed, Shared Horizons established the foundation for the future success of the NEH-NLM interagency partnership, furthering the agencies’ collaborative goals across the domains and science and the humanities, proving that such combined efforts could be successful, and helping propel the NLM’s engagement, outreach, and partnerships across hitherto untapped domains and communities.

Goal One: Exploring Mutual Research Interests

One of the cornerstones of the NEH-NLM interagency partnership is its focus on mutual research interests between the two agencies. Both the NEH and the NLM have a long-standing commitment to the role of interdisciplinarity in fostering innovative research, as well as the use of digital tools and methods to advance scholarship. Shared Horizons illustrated how these overlapping interests further both humanities and biomedical research, as well as scholarly outreach and engagement.¹⁴ Fundamentally, Shared Horizons demonstrated the capability of libraries and their partnerships to be drivers and facilitators of both knowledge dissemination and creation. By engaging with both scientists and humanists for the shared purpose of advancing research dialogue and practice, Shared Horizons expanded the reach of the NLM to new stakeholders across multiple disciplines, becoming a tangible example of what domain-specific libraries can do to expand their relevance beyond their initial field of focus.

Examining the various research publications which have emerged from Shared Horizons and the NEH-NLM interagency partnership overall illustrates the effectiveness and impact of both initiatives. One such article which emerged from Shared Horizons establishes methods for examining historical epidemiology through text mining of historical newspapers.¹⁵ The article, written by a historian and two computer scientists, appeared in the computer science journal Computer IEEE, and has been cited in articles about medical history, computer science, data analytics, and the digital humanities.¹⁶ Interdisciplinary research such as this, involving scholars from traditionally disparate fields, points to the value of the NEH-NLM partnership as a catalyst for creating new knowledge across domains.

The NLM also contributed to the research output of Shared Horizons by coordinating the release of extensible markup language (XML) data from the internationally renowned IndexCat database. IndexCat is a digital resource consisting of millions of references from the printed, 61-volume Index-Catalogue of the Library of the Surgeon-General’s Office originally published from 1880 to 1961.¹⁷ The XML dataset describes millions of items spanning five centuries and covering a wide range of subjects such as the basic sciences, scientific research, civilian and military medicine, public health, and hospital administration.¹⁸ As such, the dataset is a valuable resource for medical research across disciplines. Coinciding with Shared Horizons, the release of this unique dataset by the NLM marked the beginning of its active engagement with a new generation of researchers through the dissemination of large datasets. Since 2015 when statistics are first available, users have downloaded the dataset more than 30,000 times, demonstrating the long-term value and impact of library data curation and dissemination for researchers.

Equally compelling is Viral Networks: Connecting Digital Humanities and Medical History, a peer-reviewed, open access book published following the eponymous conference supported by the NEH-NLM alliance [Figures 1 and 2].¹⁹ The Viral Networks book anthologizes the research presented at that conference, spanning seven centuries, multiple continents, and highlighting emerging digital humanities methodologies including data visualization and network analysis.²⁰ Moreover, in the words of another reviewer, the Viral Networks book

Figure 1:

Viral Networks: Connecting Digital Humanities and Medical History (Blacksburg, Virginia: VT Publishing, 2019), the peer-reviewed, open access book which was an outcome of “Viral Networks: An Advanced Workshop in Digital Humanities and Medical History.” https://doi.org/10.21061/viral-networks. Courtesy of Virginia Tech Publishing, Creative Commons Attribution + Noncommercial + NoDerivatives 4.0 license.

Figure 2:

Participants in “Viral Networks: An Advanced Workshop in Digital Humanities and Medical History,” at work in the NLM’s Donald A.B. Lindberg Room. Photograph by Jeffrey S. Reznick and courtesy of the NLM.

[as] an electronic publication…is more than a “book.” In line with digital humanities research, the essays resemble composite works featuring narrative content and diagrams, plus links to data sets and interactive data visualizations. The publication reflects the workshop’s experimental and experiential dimensions while presenting intriguing scholarly essays on diverse facets of health and human connectivity.²¹

Notably, the open access format of the Viral Networks book was itself an outcome of the NEH-NLM partnership as it enabled cooperation with Virginia Tech and VT Publishing. Here again, leveraging institutional partnerships allowed the library and its partners to jointly advocate for scholarly content to be made publicly accessible, an effort which has been met with success measured by more than 5,900+ abstract views of Viral Networks, 6,900+ downloads, and 300+ reads since its publication.²²

Following the publication of the Viral Networks book, the NEH and the NLM convened Viral Networks, Reconnected: A Digital Humanities/ History of Medicine Research Forum [Figure 3].²³ This program reunited three scholars who participated in the earlier Viral Networks workshop, offering them an opportunity via NLM’s livestreaming platform to share the progress of their research as well as their thoughts about the future of the digital humanities and the history of medicine. Viral Networks, Reconnected continued previous conversations initialized through the NLM’s programming, bringing discussions of research developments and findings to a wide public audience. Testifying to the newly extended partnership between the NLM and the NEH in 2018, NLM director Dr. Patricia Flatley Brennan explained in her opening remarks that “I’ve recognized through time that humanities have much to offer us as we bring a scientific and engineering approach to thinking about that which can only be experienced by humans.”²⁴ Striking a similar chord on the same occasion, NEH chair Jon Parrish Peede remarked that funding studies in the history of medicine reveals “not only profound ways medical science has shaped our history and our culture, but also how much rigorous humanities research has to contribute to our understanding of sickness and health.”²⁵ These leadership views, along with the proceedings of Viral Networks, Reconnected itself testified to the success of the NEH-NLM partnership in facilitating and publishing new scholarly and open-access research in established, emerging, and intersecting fields of study. Notably, the NIH Record, the biweekly newsletter for the 18,000+ employees of the National Institutes of Health, featured front-page stories about Viral Networks and Viral Networks, Reconnected, further reflecting the value of the interagency agreement within the NIH.²⁶

Figure 3:

Participants at the 2019 program Viral Networks, Reconnected chat with NLM Director Dr. Patricia Brennan. From left: Viral Networks co-editors Katherine Randall and Dr. E. Thomas Ewing, with authors Dr. Sarah Runcie, Dr. Andrew Ruis and Dr. Christopher Phillips, NEH’s director of digital humanities Brett Bobley, NLM’s Dr. Jeffrey S. Reznick, and NLM director Dr. Patricia Brennan. Photograph courtesy of the NIH Record.

Beyond the collaborations involving the Viral Networks book and follow-up conference, the NEH-NLM partnership has yielded a large and widely known corpus of research published on Circulating Now, a blog of the NLM. ²⁷ Circulating Now, which is designed for a broad audience, encompasses research about medicine, the digital humanities, and the human condition across time and place. These posts include interviews with researchers, summaries of conference sessions, and new research findings stemming from the programs of the NEH-NLM interagency partnership and related library-supported research in its vast collections which span eleven centuries, reflect countless aspects of the human condition, encompass a range of digital and physical formats, and originate from nearly every part of the globe. Undergraduate students’ research with digital humanities scholars is a recurring focus of these posts, highlighting student-faculty collaboration outside of formally published works. Since 2015, eighteen posts relating to the activities of the NEH-NLM partnership have been viewed more than 12,000 times, demonstrating the wide public reach of this medium and its value to improving engagement with the library’s collections, programming, and multidisciplinary staff.

Goal Two: Developing Scholarly, Training, and Educational Opportunities

In addition to supporting research, the NEH-NLM partnership has established and facilitated a variety of scholarly, training, and educational opportunities. From an engagement perspective, the NLM already had several pre-existing programs in place to serve established scholars and biomedical researchers before the interagency partnership. The collaboration with the NEH enabled the NLM to leverage these programs and extend their reach to include early-career scholars, teachers, and students in both the sciences and the humanities, as well as the public more broadly.

The success of Shared Horizons gave credence to the value and viability of interdisciplinary conferences, and two subsequent meetings have been held specifically in the educational context: the aforementioned Viral Networks: A Workshop in the Digital Humanities and Medical History and Images and Texts in Medical History: An Introduction to Methods, Tools, and Data from the Digital Humanities which was also supported by the Wellcome Trust, one of the largest foundations in the world and the largest in the United Kingdom [Figures 4 and 5].²⁸ Collectively larger than Shared Horizons, these conferences purposefully included hands-on training sessions to help improve the digital humanities skills of attendees and their familiarity with the NLM’s data and collections.²⁹ As with Shared Horizons, the organizers explicitly welcomed early career scholars to participate, providing them with valuable career experience both in the form of conference presentations and the published works that followed.

Figure 4:

Collage of posters designed both to advertise the collaborative workshop Images and Texts in Medical History: An Introduction to Methods, Tools, and Data from the Digital Humanities, and convey the diversity of images in the collections of two of the co-sponsoring libraries, the National Library of Medicine and Wellcome Collection of the Wellcome Trust. Posters courtesy of Virginia Tech, Wellcome, and the NLM.

Figure 5:

One of the Images and Texts workshop sessions. Photograph courtesy of E. Thomas Ewing.

The NEH-NLM interagency partnership additionally enabled the NLM to host multiple NEH-funded summer seminars for high school teachers interested in digital history [Figure 6].³⁰ The seminars, organized and run by Professor E. Thomas Ewing of Virginia Tech, focused on the 1918 Spanish Influenza outbreak, and included daylong visits to the NLM. During these visits, participants heard from library staff about the NLM’s collections and public programming as well as from leading biomedical researchers from the National Institutes of Health about how their work intersected with that of the library. Moreover, the teaching seminars concluded with participants completing a variety of cumulative digital projects and presentations, many of which utilized data and collections from the NLM.³¹ Leveraging both the interdisciplinary nature of the NEH-NLM partnership and the library’s existing programs, these summer seminars increased the outreach of the library and the use of its collections while simultaneously supporting the professional development of participating educators.

Figure 6:

NEH Summer Seminar participants during their visit to the NLM in 2015, and a selection of NLM collection items that the group studied. Group photograph courtesy of Wilsonia Cherry, deputy director, NEH Division of Education Programs. Images of NLM collection items courtesy of the NLM.

Staff leading the NEH-NLM collaboration have also considered public educational opportunities in programming, especially as video streaming tools have become more robust. NLM streamed the keynote addresses from both the Images and Texts and Viral Networks conferences and subsequently archived these recordings for future and free on-demand access, with hundreds of views for each session. Following this model and influenced by the shift to all-virtual programming because of the COVID-19 pandemic, the NEH-NLM collaboration has yielded a series of additional activities on relevant topics in the digital and medical humanities. Foremost among these was Reporting, Recording & Remembering the 1918 Influenza Pandemic, a virtual symposium convened in cooperation with Virginia Tech.³² The symposium invited undergraduate students studying the history of data in social context to present their research on various medical, social, and cultural aspects of the 1918 pandemic.³³ Moreover, the program included comments from National Institute of Allergy and Infectious Diseases Senior Scientific Advisor Dr. David Morens and historian Dr. Nancy Bristow of the University of Puget Sound. More than 500 individuals viewed the symposium in real time, and, at the time of this publication, more than 1,500 had watched the archived proceedings on-demand. The NIH Record covered Reporting, Recording & Remembering the 1918 Influenza Pandemic on its front page, under the headline “History Comes Alive: Students Learn Lessons from Previous Pandemic” and on nearly two entire pages within its issue, once more underscoring the value of the NEH-NLM partnership.³⁴

Complementing the success of this virtual program, ten NLM History Talks were co-sponsored by the NEH between 2016 and 2022. Together, the archived livestreams of these programs have been viewed more than 5,500 times, and their associated interviews on Circulating Now have been viewed nearly 12,000 times. All in all, through this virtual programming and leveraging opportunities and networks afforded by the NEH-NLM partnership, the library has encountered a significant uptick in its public engagement.

As an engine driving these many programs, and by creating, convening, and facilitating free access to them, the NEH-NLM partnership has been measurably successful in supporting scholarly, training, and educational opportunities for researchers, students, and members of the public. More than this, the partnership testifies to the achievements of the NLM in the public sharing of medical knowledge while simultaneously expanding its institutional outreach and engagement to new audiences.

Goal Three: Supporting Professional and Career Development

Overall, the NEH-NLM collaboration has yielded programming involving more than 70 presenters hailing from more than 50 universities and institutions, with hundreds of additional students, teachers, scholars, and members of the public participating as attendees. This data points to an important outcome of the collaboration, yet one which is difficult to quantify: the personal, professional, and institutional networks created and cultivated by the partnership. Some of the results of this evolving network have already been mentioned, including numerous interdisciplinary research projects and publications. Other results, such as the impact of the collaboration’s programming on individuals, are more challenging to capture.

Beginning with Shared Horizons, many participants have been early career scholars and tenure-track professors. Beyond participating in collaborative events, many of these same academics went on to publish work in the digital humanities based on the research encouraged by programming of the NEH-NLM partnership. Both this participation and publishing likely played a role in advancing their careers, although the extent to which this is true compared to individuals’ other scholarly activities is difficult to ascertain. Similarly, benefit to individual members of the public participating in lectures and recorded content is difficult to measure beyond simple viewing statistics. Also ambiguous is the long-term impact of teaching seminars, digital humanities methods workshops, and undergraduate visits to the NLM. It is important to neither discount nor overemphasize the positive impacts of the partnership’s programming, and it would be valuable for the NLM and the NEH to continue to study the question of influence and impact of their activities on individual participants.

However, past participants have anecdotally reflected positively on their experiences when presented with an opportunity to share their critical feedback. For instance, anonymous survey comments from participants in the Images and Texts conference positively noted the new knowledge and networking connections they gained from their experience. One participant stated that the skills learned at the workshop “will help me to build collaborative opportunities for my institution,” while another said that they planned on “incorporat[ing] some digital methods into a graduate research methods course that I teach.”³⁵ Teachers participating in the two Summer Seminars focused on the 1918 Spanish Influenza similarly reported in surveys that the program improved both their pedagogy and personal scholastic abilities, with one 2015 respondent noting that

I fully anticipate [the conference] to enhance my ability to effectively utilize primary sources in the classroom, to the benefit of my students. ... As far as my scholarship is concerned, I was intellectually challenged on numerous occasions throughout the seminar and was invigorated to keep learning and growing as an intellectual. ... After taking this seminar, I now want to go back to the academic world and pursue either another Master’s Degree or a PhD at some point in the near future.³⁶

Comments like these point to the value of the library’s programming through the NEH-NLM partnership in helping to support career and professional development, an outcome which suggests the opportunity of future long-term surveying to define impact more clearly.

The structure of the programming and engagement achieved by the NEH-NLM partnership has purposefully focused on creating and supporting dynamic spaces across disciplines, career stages, and communities with common research interests. Connecting humanists with scientists, students and early career researchers with veteran scholars, and members of the public with researchers through the library’s programs has undoubtedly improved knowledge creation, dissemination, and accessibility, key missions of both the NEH and the NLM. The Shared Horizons conference—the first major product of what has become a decade-long collaborative initiative—set in motion an impactful and mutually-supportive partnership which has advanced professional and career development in health, medicine, and related fields. Over the next dozen years, it facilitated multiple collaborations, engagements, programs, and publications involving dozens of early-career and established scholars, educators, and students in both the sciences and the humanities. These activities benefited thousands of audience members and readers, at every turn advancing the complementary missions of the agencies. Such impactful initiatives included public symposia, research workshops, cosponsored public lectures, and a peer-reviewed, open-access book on the digital medical humanities. However, little did anyone associated with Shared Horizons know that the future terrain Aiden and Michel anticipated would include a pandemic that would, in turn, give rise to Data, Health, and the Digital Humanities: Shared Horizons II.

2022: Shared Horizons…Worlds Apart

The Shared Horizons conference of 2013 took place in a very different world from our COVID times and post-COVID culture. The meeting was solely in-person, as scholars had been gathering at conferences for decades, and at a time when widespread video streaming of lectures was in its infancy. Shared Horizons also convened when online content was relatively static, well before today’s pervasiveness of social media connecting users via decentralized web networks through which they access, use, and re-use their own data and the data of other users. Moreover, Shared Horizons marked the early period of open data policies, before the rise of critical data studies.³⁷ Perhaps most striking of all, Shared Horizons occurred when scholars studied pandemic diseases, and their varied impact on the human condition, uniquely through the historical record.

The NEH-NLM partnership allowed the agencies to respond to these unprecedented times by supporting Data, Health, and the Digital Humanities: Shared Horizons II (DH²), a series of virtual programs, and a scholarly, open access book—all made possible by a grant to Virginia Tech (NEH 2022; NLM 2022).³⁸ Through its very character as a virtual scholarly initiative focused on studying challenging stories of human experience during the contemporary pandemic, Shared Horizons II reflected the hallmarks of its historic time. Each contributor brought to it not only their disciplinary perspectives but also their own experiences of lockdowns, masking, and seeing news stories in real time about pandemic-related health disparities among high-risk and underserved populations, including racial and ethnic minority groups and rural communities. Each faced social distancing combined with virtual interactions, realizing the benefits, drawbacks, and implications of both. Each witnessed the race for a vaccine, its subsequent distribution, and then the race to receive “the jab” and subsequent boosters, all while learning how to use different kinds of COVID-19 home test kits and wondering when the pandemic would become endemic.

These and related subjects—in addition to contemporary public commitments to advancing diversity, equity, and inclusion in science and society—informed the two virtual keynote lectures of Shared Horizons II, the first by Kim Gallon, PhD, Associate Professor of Africana Studies at Brown University, and the second by Katy Kole de Peralta, PhD, Clinical Assistant Professor of History at Arizona State University. In her lecture “Shutting the Digital Back Door: Creating Tech Justice with Health Data Liquidity and the Digital Humanities,” Gallon explored the concept of the digital back door in healthcare: technological processes and tools used in healthcare, such as racially biased algorithms, infrastructural limitations, and dirty data and their historical roots in structural and systemic racism. The methodological use of the digital humanities, she argued, “offers an opportunity to eliminate digital back doors by creating more humanistic and equitable health information technology (health IT) that address health disparities and inequities.”³⁹ In offering her lecture “Life after Lockdown: Pandemic Perspectives from Peru,” Kole de Peralta focused on The Journal of the Plague Year: A COVID-19 Archive, a digital, open access, crowdsourced archive. Since its inception in March 2020, she explained, its archival team has “intentionally collected pandemic stores in ethical, inclusive ways, demonstrating what we gain when we intentionally build digital humanities projects that expand beyond academic institutions and audiences.” Kole de Peralta explained further that the archive “successfully partnered with universities, libraries, and contributors across the global south including the Philippines, American Samoa, India, as well as Peru” where the population experienced “one of the earliest, strictest, and longest lockdown policies, and yet it is still the global leader in COVID-19-related fatalities.”⁴⁰ Drawing on quantitative and qualitative data submitted to the archive and oral histories, Kole de Peralta examined the breaking points that undermined public health efforts and what life after lockdown looks like in Peru.

The contributors to the book attended these virtual lectures and, following each one, met virtually with the speakers for in-depth discussion and exchange of ideas about the impact of pandemic events on their research, teaching, and public service. The groups discussed witnessing pandemic death and the disparity of public health resources in real time via media coverage. They shared their experiences of building connections with colleagues through technology while longing for renewed physical engagement and coping with isolation, even as it sometimes gave way to welcome periods of contemplation. They discussed realizing the flexibility and navigating the limits of scholarship and research in the digital space, as well as the need to be patient until circumstances could allow for renewed access to valued collections for research. Through these conversations, a distinct sense of community and camaraderie arose among Shared Horizons II participants. The resulting open access book, Challenging Stories: Rethinking Health in the Spaces between Data and Narrative is as much a mirror of their dialogue and witness to unprecedented times as it is a memorial of a once-in-a-lifetime event impacting human experience and health [Figure 7]. Apropos of the circumstances informing its conception and production, as the editors explain in the introduction to their book, they chose to call the volume “challenging”

Figure 7:

Challenging Stories: Rethinking Health in the Spaces between Data and Narrative (Blacksburg, Virginia: VT Publishing, 2024), the peer-reviewed, open access book which was an outcome of “Data, Health, and the Digital Humanities: Shared Horizons II (DH²).” https://doi.org/10.21061/challengingstories. Courtesy of Virginia Tech Publishing, Creative Commons Attribution + Noncommercial + NoDerivatives 4.0 license.

…because of the dual meaning of the word in its most common forms: as an adjective, challenging can mean demanding, difficult, or exacting but as a verb, the word can also mean confronting, defying, or competing. Embedded in the book’s title, therefore, is a tension between challenging stories, that is, stories of exacting or difficult circumstances related to diseases, medicine, and health, but also challenging stories, in the sense of questioning the narrative format as a way to explain and experience disease, medicine and health.⁴¹

Framed as such, this original and collaborative research output born from challenging times achieves even more as it helps readers see individuals—of the past and the recent present—living through challenging times “for who they are and for what they represent.” As the editors explain further with reference to the historic photograph on the front of the book, and, on its back cover, a portion of the New York Times commemorative list of the first 100,000 deaths from the COVID-19 pandemic: “We may not know their names, ages, or traits, as summarized in the New York Times, and we do not see their faces, as in the hospital photograph, but their stories provide the illustration that we need to understand their lives and why they mattered. The challenges posed by their stories are challenges for scholars to interpret and readers to understand.”⁴²

Continuance, not Conclusion, and Lessons Learned

Twelve years on, the NEH-NLM partnership represents a legacy of impactful interagency partnership worthy of greater attention as federal agencies strive to increase collaboration for the greater good and evaluate their progress in achieving this important goal. As Shared Horizons and Shared Horizons II bookend profound changes in science and society, they help to define the best of what an interagency partnership can achieve during a time of involving a host of factors—from evermore data-driven research and program evaluation to the greater prevalence of artificial intelligence to the challenges of writing histories of the early twenty-first century based on wholly digital sources, such as blogs and social media. Through all these factors and many more, interaction between biomedicine and the digital humanities will be essential to navigate the challenges and opportunities of change. A particular challenge will be how to continue to meet at these intersections—intellectually, physically, and virtually—and achieve meaningful dialogue and impactful research outputs.

The NEH-NLM interagency partnership provides a case study for other government entities seeking to establish “whole of government” partnerships and holds a set of fundamental lessons to help guide interagency collaboration to success in other contexts:

1. Interagency collaboration can begin in a variety of ways, involve a variety of activities, and meet a variety of objectives depending on the interests of the collaborating agencies. By extension, the character of any single interagency collaboration depends on how it develops, why it exists, and who is working to achieve it.

2. Interagency collaboration depends upon identifying complementary agency missions and interests and working toward the greater good, all with clear and consistent communication and vision. Such collaboration also requires mutual support every step of the way among all participating agencies. By extension, such work must involve a commitment to proactively addressing and resolving any conflict during decision-making.

3. Interagency collaboration requires the support of agency leadership and key colleagues, including executive offices, legal counsel, and ethics specialists, as well as buy-in from colleagues who serve as subject matter experts. In this respect, interagency collaboration can serve as an effective focal point for a diverse team combining experience and expertise in their public service toward common goals.

4. Whole-of-government approaches to interagency collaborations enable joint data collection and evidence-building, aiding in program assessment and review in line with the requirements of federal mandates for government accountability including the Foundations for Evidence-Based Policymaking Act of 2018.⁴³

5. Interagency collaboration holds great promise for modeling good leadership for public servants at all levels of the chain of command. Interagency collaboration create a relationship born from and involving mutual respect and support, which can serve as a model for such professionalism among colleagues across, and beyond, one’s agency.

Taken together, these fundamental lessons point to a bottom line: Strategically designed and collaboratively developed interagency collaborations make great sense. They testify to powerful institutional synergies and the determination of colleagues to work together on multiple levels for the greater good. The NEH/NLM collaboration is an example of one “whole of government” interagency collaboration which has yielded effective public programming, involved sound financial decisions, and fostered a culture of intra-and interagency mutual support among colleagues. While the NEH/NLM collaboration is unique, the “whole of government” approaches embodying its creation, development, and overall success can operate in any agency culture to serve the greater good and the dynamic needs of an ever-changing world.

Biographies

Frank Vitale IV, MSc, MLIS, is Assistant Professor, University Archivist and Special Collections Librarian at Millersville University of Pennsylvania. His research focuses on outreach for libraries and archives, the history of education, and the digital humanities. His research and co-authorship of this article were supported in part by his appointment to the NLM Associate Fellowship Program sponsored by the NLM and administered by the Oak Ridge Institute for Science and Education.

Jeffrey S. Reznick, PhD, is Senior Historian at the National Library of Medicine, National Institutes of Health. Dr. Reznick is an experienced public sector executive and award-winning historian who works strategically with teams across the library to provide leadership and direction to advance access to the NLM’s world-renowned collection, as well as its growth and preservation for future generations. Dr. Reznick completed his research and co-authorship of this article as part of his official duties, with support from the NLM.

Mr. Vitale and Dr. Reznick thank their colleagues Brett Bobley, Kathel Dunn, E. Thomas Ewing, Lindsay Franz, Ken Koyle, Beth Mullen, and Jennifer Serventi for their support during the completion of this article.