The Intangible Rewards of Engaging with Research Data

Guest post by Amanda K. Rinehart, MS, MLIS, Life Sciences Librarian and Associate Professor for the Department of Research and Education, University Libraries, at the Ohio State University. Ms. Rinehart will deliver the 2022 Joseph Leiter NLM/Medical Library Association (MLA) Lecture, “Data Communities: Room for Everyone, Roles for Librarians,” on December 6, 2022.

As I reread the OSTP Public Access Memos from 2013 and 2022, I am struck again by the premise behind openly sharing research data:

When federally funded research is available to the public, it can improve lives, provide policymakers with important evidence with which to make critical decisions, accelerate the rates of discovery and translation, and drive more equitable outcomes across every sector of society.

That’s ambitious enough but sharing research data goes a few steps further: It also uses our taxpayer funds more efficiently, increases public trust in the scientific endeavor, and facilitates research collaboration. However, if you haven’t had the opportunity to be a part of it yet, these can remain abstract motivations and may seem daunting. How and why would any librarian engage with sharing research data?

Research data management (RDM) is the organization, storage, preservation, and sharing of data. When a researcher is faced with a new RDM expectation—especially one that is often seen as a burden instead of a boon—it’s a natural fit for them to trust their librarian to help. Librarians are allies in this changing and confusing landscape. Because an inherent aspect of cutting-edge research is that it has never been done before, it often results in data that has never been previously collected or synthesized. As a result, this data doesn’t yet have ideal resources, workflows, or technologies for sharing it.

There is rarely one solution or easy answer. Librarians must ascertain what the researcher needs, whether it be awareness of new requirements, information about their options to meet these requirements, or education about better data management practices. We point to resources like shared curation training, multi-institutional partnerships and international perspectives, or appropriate data repositories. We acknowledge workflow gaps and challenges and summarize those needs across disciplines and institutions. We advocate for better resources, services, and support for managing research data. Because of this complexity, finding the combination of resources that results in appropriate sharing is more akin to building a relationship or becoming part of the research team rather than a transactional interaction.

However, providing assistance that is tailored to the specific needs of the researcher takes time, effort, and knowledge. Because RDM is a burgeoning field heavily dependent on changing technology and policy, staying abreast of current practices is a heavy investment as well. Most librarians, if not all of them, face reduced staffing, longer hours, more responsibilities, and limited pay. Therefore, what would induce a librarian to engage with research data? For myself, I share values with those cited in the OSTP Public Access Memos, so I have found many of my RDM interactions quite rewarding, and I suspect other librarians do as well.

For example, I participated in a meeting comprised of researchers who wished to improve infant and maternal health outcomes for local lower-income communities. In our county, we have a high rate of infant and maternal mortality, with Black infants dying at 2.7 times the rate of White infants. The researchers wanted to use an app, pre-installed on free phones, to make transportation to health care providers low cost or free. But how would they manage sensitive location and appointment data? Who needs access to that data, and when? What regulations apply, and how can we go beyond those requirements to make sure we are ethical? These are difficult questions, but they can lead to heartening discussions and innovative solutions with custom databases, Data Use Agreements, de-anonymization, encryption, and ultimately, data destruction.

This is just one example that touches on topics that I care about: infant and maternal health, social justice and equity in health care, and effective, efficient transportation as part of city infrastructure. But I’m not a health care provider, a sociologist, or a city planner. I’m a librarian, and as such, I can contribute by meeting researchers where they are, determining their most urgent needs, guiding them to resources, identifying gaps in knowledge and services, and advocating on their behalf to have those gaps filled.

I know my work doesn’t solve these large real-world problems or even just the problem of making research data available to those who can most beneficially use it. But any improvement in RDM practice gets us one step closer. I don’t have to solve the world’s problems to help solve the world’s problems. If you care about how data can be used to fulfill the NIH mission to “enhance health, lengthen life, and reduce illness and disability,” then you can see the value in becoming engaged with research data and how librarians can help researchers meet that goal.

Prior to starting her career as a librarian in 2011, Ms. Rinehart spent eleven years as a biologist with the United States Department of Agriculture testing alternative agricultural methods to reduce the human impact on climate change. Ms. Rinehart has a Master of Library and Information Science degree from the School of Information at the University of South Florida and a Master of Science degree in Botany and Plant Pathology from Michigan State University.

The More AMIA Changes, the More It Stays the Same . . .

Right at this very moment, the American Medical Informatics Association (AMIA) 2022 Annual Symposium is underway in Washington, D.C., and we encourage you to visit NLM @ AMIA 2022 for updates on NLM’s products and programs. Now this may sound quite familiar to those of you who have attended AMIA annual symposiums in Washington, D.C., and other major cities over the past 30 years, but this year it is different. And yet, it is the same.

What’s the same? Well, for me and almost 3,000 other attendees, AMIA is our professional home. Through meetings and conversations, journal articles and webinars, and a host of new events and meetings, members build their knowledge about biomedical and health informatics, share that knowledge with colleagues, and advance the health of the public through informatics. We have built friendships, watched babies be born and grow into adults (including my son Conor), and grieved the loss of great leaders in the field. Colleagues have debated the wisdom of electronic health records that may have inadvertently contributed to clinician burnout and expanded the scope of our design and deployment efforts to encompass tools useful to consumers and language reflective of the diversity of society.

AMIA has welcomed young people into informatics and sponsored high school-student participation in national meetings. Special events now include rapid response to public health threats, special interest meetings for women in informatics, and expanded attention to diversity and inclusion. The fall symposium provides an opportunity for formal and informal mentoring, a quick hug with an old friend, and a reunion of those with whom we studied the basics of the field.

And yet, over 30 years, many things have changed! First and foremost, AMIA as an organization has grown, engaged new leadership, and developed new special interest groups. These each change the tenor of the meeting by adding new events to an already rich and attractive suite of offerings and bringing like-minded people together. The ideas shared and the research reported through the annual symposium have morphed throughout the years; now artificial intelligence takes center stage, tempered by thoughts of transparency and equity. A larger number of panels and industry sessions reflect the rapidly changing landscape of informatics. Electronic posters and smartphone apps take the place of what once were paper posters displayed in long corridors of bulletin boards and a three-inch-thick compilation—dare I say phone book size—of all the papers to be presented at the sessions.

And of course, the pandemic changed both everything and nothing. AMIA still hosted an annual symposium and participants still gathered, at least over video chat! Throughout the pandemic, AMIA offered virtual and hybrid conferences—this is the first annual symposium completely in person since 2019 and boy, was I ready for it!

So, rejoice with us—our annual touchstone of gathering for the science of biomedical informatics and the social support of friends and colleagues continued! Please plan to join us in 2023 and see for yourself what it is like!

Who Really Are Our Users, and How Can We Help Them?

Well, this is a question too big for even the largest biomedical library in the world to answer. Our users are everywhere, and in fact, the same user may approach us with very different needs or personas, such as the brilliant cell biologist who is also the mother of a sick toddler. Today, I am thinking of that huge army of applied clinical informatics specialists and how we might begin to help them.

Applied clinical informatics specialists form the technical workforce that make health information technologies work for patients and clinicians. These individuals often have a background in nursing, medicine, or another clinical specialization. Their advanced training and advanced certifications can attest to their understanding of how health care is delivered, the data and information resources needed to deliver that health care, the data underlying care, and the person-professional-technology engagement needed to better deliver care through effective use of information technology.

NLM is pretty clear about its role in supporting the enormous research and development efforts that design, deploy, and evaluate computer systems for health care and in making the basic and clinical biological and biomedical literature accessible to patients, clinicians, and researchers. To the best of my knowledge, NLM has not done enough to think about the applied clinical informatics community as a distinct stakeholder group, and it is now time to do so!

Applied clinical informatics professionals are skilled at designing, installing, and implementing electronic health records. Some of them specialize in evidence-based practice, bringing the research evidence into the point of care. Others focus on human computer interaction, striving to harness the power of computing to support practitioners and to avoid cumbersome or ill-designed clinical records systems. Still other applied clinical informatics professionals are crafting the decision-support tools that bring effective, ethical artificial intelligence into practice. Some serve key roles in their institutions’ value-based health care deliberations, bringing to light through data where health care interventions bring value to the patient and the system. And some applied clinical informatics specialists focus on translating science into care. These positions are critical to making sure that the advantages of information technology reach into the realm of clinical practice… and man oh man, are they busy!

This makes it hard for applied clinical informatics specialists to make use of NLM’s vast resources in the ways different from the typical researcher uses of these resources – as part of a larger process of building or evaluating research ideas, in a reflective manner, through exploration of several articles on the same theme, and with the time, the patience, and the purpose to discern lines of reasoning out of multiple articles. To best support the applied clinical informatics community, NLM needs to expand its ways of doing business, and find ways to make in-the-moment search for best practices or clinical guidance available. How can we do this?

Rethink the “typical library user” and be open to the atypical user. NLM also serves as the repository of record for biomedical knowledge. We have presumed that the synthesis and application of that knowledge is the responsibility of the reader. Perhaps now is time for us to find new ways to partner with outside organizations that can cast their special eye over our resources and to cull their knowledge for the applied clinical informatics specialist.

Work on translating our research findings into practical practices. NLM makes a substantial investment in developing new algorithms that find better ways to link clinical records together. We have a small but fledgling program, our tech transfer funding to stimulate new businesses relevant to the use of data in health care. Perhaps we should better advertise the availability of these funds and target the challenges experienced by applied clinical informatics practitioners.

Expand our abilities to cull basic science and clinical care innovations from the literature. Applied clinical informatics professionals have, as part of their job, the building of the information tools to bring science into practice. We need to learn from them so we can better expose our literature for their needs, keeping them abreast of new and emerging findings in the literature that will someday make their trajectory into practice.

Partner with specialty organizations to make sure that the important lifelong skill development of being an applied clinical informatics professional becomes a realistic process in their career trajectory.

A few months ago, I spent a morning speaking with applied clinical informatics professionals to affirm their interest in NLM supporting them in their work and to listen to their needs, dreams, and demands. In a future blog, I will tell you more about what I learned from them!

Want to Improve Informatics? Don’t Forget About First-Generation College Grads

Guest post by Kim Unertl, PhD, Associate Professor in the Department of Biomedical Informatics, Vanderbilt University Medical Center, and Director of Graduate Studies for the Biomedical Informatics MS/PhD Program at Vanderbilt University.

Who Belongs in Informatics?

I often ask colleagues and trainees about how they decided on a career in biomedical informatics. Over the years, this question has elicited a pattern of responses often involving a chance encounter where the person discovers that there’s a field that connects computer science with health. These were topics they were interested in but weren’t sure how to combine.

Looking for a career in informatics? NLM supports research training in biomedical informatics and data science at 18 U.S. educational institutions. For more information, visit our External Programs Division Grants and Funding and Research Education Program (R25) web pages.

Much of my work now focuses on expanding access to training and career pathways in biomedical and health informatics so that more talented young people learn about informatics earlier and in a more purposeful way that helps them understand that there’s a place for them in the field. A major goal is to increase diversity in biomedical informatics so that informatics better reflects the diversity of the U.S. population and can develop more equitable innovative technology solutions to major health challenges.

One large population that could benefit from increased emphasis in recruiting and networking efforts are first-generation college students, especially those from groups under-represented in the field.

Navigating Academia without a Safety Net

The fact that I’m a successful faculty member at an R1 university (an institution that conducts high research activities) is an improbability. Neither of my parents graduated from high school. My dad earned his GED, joined the Marines, and completed a carpentry apprenticeship program thanks to the GI Bill, which provides benefits and programs to veterans. My parents shared an unshakeable belief in the importance of education for their children, but my siblings and I had to figure out how to navigate the unfamiliar world of higher education ourselves.

The whole process was very lonely, confusing and overwhelming. Even today I regularly feel like I’m missing key behind-the-scenes information about how academia and research environments work. In addition, the skills I developed in managing independently and figuring things out, although crucial in helping my educational trajectory, are not well-aligned with the collaborative nature of science.

I’m far from the only person with this experience. A large proportion of K-12 students in the United States have parents who did not complete an undergraduate degree. This affects every aspect of their educational path. Data consistently show that if you have at least one college-educated parent, you have higher odds for finishing a bachelor’s degree and completing an advanced degree, which has multiple long-term financial implications. Around 13% of the U.S. population holds an advanced degree such as a Master’s, Professional, or Doctorate. Recent studies have confirmed that the odds of a tenure-track faculty member having at least one parent with a PhD are 250 times higher than having a parent without a PhD. The gap is further compounded when these faculty members are also part of other under-represented groups in categories such as gender, race, and ethnicity.

Why Does This Matter?

All of us involved in biomedical research and academic training should care about this reality. Every time a career path is closed to someone, we are missing out on what that person could contribute to their field, to patients, to public health, to their communities, and to the world. The systems that serve to lock under-represented and first-generation students out of opportunities keep amazing and talented individuals from achieving their dreams and goals. The next idea that revolutionizes medical care, cures a disease, invents a device, or identifies ways to address health equity issues may never have a chance to blossom because a student might not see an academic or research career as a viable option. We all lose as a result.

You Have a Role to Play

The good news is that we can all help to improve access to the field for diverse, first-generation students and trainees. We can all open doors to higher education opportunities and scientific career paths, starting with building connections with K-12 students. Mentoring high school and undergraduate students through the Vanderbilt Biomedical Informatics Summer Program (VBISP) has been some of the most enjoyable and worthwhile work of my career.

Developing and supporting programs that provide access to research opportunities through internships is another way we can open doors into scientific research for more people. This can take many forms – running an internship program, serving as a mentor for a summer intern, presenting a talk at a seminar, or financially supporting high school students’ participation in informatics summer programs. Every contribution has the potential to make a significant difference.

We also know that opening doors is not enough. Once students begin an undergraduate or graduate STEM degree program, we need to ensure that training environments are equitable and inclusive. First-generation students need support to help navigate higher education and to start out on their research careers. Information that many take for granted about how to navigate academia and research environments can present an isolating mystery for a first-generation student. Many feel as if they do not belong. Making what has been described as the hidden curriculum of higher education more transparent can help students move forward on a pathway towards a successful career and eliminate some of those feelings of isolation. Addressing topics such as coping with imposter syndrome and collaborating with a mentor can provide skills and confidence, as can regularly checking in about mental health and connecting students with peers with shared experiences.

First-generation students have so much that they can contribute to science. Leaving them sitting on the sidelines when science needs everyone on the playing field is a loss for all of us.

Dr. Unertl gratefully acknowledges Ellen de Graffenreid, Mia Garchitorena, and Jessica Ancker for feedback on drafts of this post.

In addition to her work at Vanderbilt University and the Vanderbilt University Medical Center, Dr. Unertl directs the VBISP and is co-director for the American Medical Informatics Association High School Scholars Program. Her research focuses on interactions between people, process, and technology in health care, especially related to clinical workflow, and on development of new pathways into biomedical informatics.

Revealing and Preserving Data for Today and Tomorrow

Guest post by Jeffrey S. Reznick, PhD, Chief of the History of Medicine Division (HMD) at the National Library of Medicine (NLM); Kenneth M. Koyle, MA, Deputy Chief of HMD; and Christie Moffatt, MLIS, Program Manager of the HMD Digital Manuscripts Program.

On this International Day for Universal Access to Information, we proudly showcase the globally appreciated role of NLM as a long-standing steward of vast collections of data even as it is now a recognized home of data science at the National Institutes of Health and beyond. A key part of the NLM mission is to provide access to that data and all the biomedical information we hold in our collections, which span ten centuries and originate from nearly every part of our world.

During the past several years, talented staff of the library have recognized this enduring and dedicated stewardship as part of our institution’s data-driven present and future by curating Revealing Data, an ongoing series of posts on the division’s popular blog Circulating Now. This series explores what data-minded researchers from a variety of disciplines are learning from centuries of data preserved in the collections of the NLM and associated with a variety of topics: from 17th-century bills of mortality to tuberculosis in the 19th-century to the 1918 influenza pandemic and more recent 20th- and 21st-century public health issues. Circulating Now also explores data-driven conservation research on some of our most treasured collections, research methods and tools for analysis in the study of digitized images and texts, and the origins, purpose, and development of highly regarded NLM resources like GenBank and the Index-Catalogue of the library of the Surgeon General’s Office.

A fundamental role of the NLM binds these data-driven explorations: its Congressionally mandated mission to collect, preserve, and provide access to past and present medical and scientific information in its multiplicity of formats, and, by extension, the vast amounts of data which reside in them. Generations of dedicated civil servants, including archivists, data scientists, historians, librarians, and many others, contributed their expertise to the NLM preserving the data-rich collections studied by a diverse field of researchers today. Without this commitment and these efforts, so much of this research would not be possible.

The NLM’s work of preservation continues today not only because it is mandated but also because the institution owes such work to future generations so they will be able to undertake their research, reveal new stories about the human condition, and make new discoveries. Today’s preservation work is evolving in tandem with changes to the collections themselves. NLM staff are developing new processes to collect and preserve web content, born-digital records, and digital ephemera while continuing to preserve vast quantities of data stored in paper, parchment, and vellum, some of it centuries old.

Viewed nearly 18,000 times since it was launched in 2017, Revealing Data reveals much more than valued data. It connects us to the very essence of NLM’s mission, its history, and the enduring importance of our institution’s initiative to preserve this data and the contexts in which it was originally created for today and tomorrow.

Dr. Reznick leads all aspects of HMD and has over two decades of leadership experience in federal, nonprofit, and academic spaces. As a cultural historian, he also maintains a diverse, interdisciplinary, and highly collaborative historical research portfolio supported by the library and based on its diverse collections and associated programs. Dr. Reznick is author of three books and numerous book chapters and journal articles including as co-author with Ken Koyle of History matters: in the past, present & future of the NLM, published in 2021 by the Journal of the Medical Library Association.

Before joining NLM, Mr. Koyle served as a medical evacuation helicopter pilot and as a historian in the U.S. Army. He is the co-editor with Dr. Reznick of Images of America: U.S. National Library of Medicine, which is a collaborative work with HMD staff.

Ms. Moffatt leads content development for NLM’s Profiles in Science website, which provides access to 20th century manuscripts in science, medicine, and public health. As Chair of the Library’s Web Collecting and Archiving Working Group, she supports web archiving on topics and events related to NLM collecting interests, including Global Health Events (Ebola, COVID-19, Monkeypox), HIV/AIDS, and the opioid epidemic, among others.

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