Bridging the Gap: From Research to Policy

Guest post by Ellen T. Kurtzman, PhD, MPH, RN, FAAN, associate professor, School of Nursing, The George Washington University

As a health services researcher, I have always been interested in how to bridge the divide between research and policy. I constantly ask myself, “Which of my research questions will inform today’s most pressing policy debates?” and “How can I teach the next generation of nurse scientists to conduct policy-relevant research?” I recently left my academic position and spent a year working on Capitol Hill as one of eight 2018 –2019 Robert Wood Johnson Foundation Health Policy Fellows. In this blog, I offer a few key lessons from my time as a fellow that influenced my scholarship.

Lessons from my fellowship year

  • Right place, right time. The policymaking environment is fast paced. New issues emerge quickly, moving others lower on the priority list. The deck is constantly being reshuffled. Perhaps there is no better example of this than COVID-19. Who knew a year ago that a pandemic would draw decision makers’ attention away from other pressing policy issues? When a policy issue like this emerges unexpectedly, the need for evidence is virtually instantaneous. But the research process is methodical and cannot easily be accelerated. Randomized studies and clinical trials take time. Which implies that the scientific process and policymaking timelines do not naturally mesh. Recognizing that available evidence needs to be ready at precisely the moment that a policy issue is being contemplated suggests that the relationship between science and policymaking should be reframed.  
  • Positioning researchers to contribute. Because there are so many policy issues being contemplated simultaneously, deep subject matter expertise from authoritative and independent sources is highly valued. Scientists and academics are ideally situated to be honest brokers, yet it is not always easy for policy staff to find expertise on short notice. Researchers need to better position themselves and their science during a noncrisis period so that they are ‘top-of-mind’ when urgent needs emerge.
  • All about trade-offs. Harold Lasswell, an influential political scientist and theorist, helped define “politics” by asking, “Who gets what, when, and how?” Public policy is the art of allocating scarce resources to competing parties. I have always been interested in research questions about health care quality and value, but many of the secondary data sources I rely on lack the variables that would enable me to examine price or cost outcomes. In the short time I spent on Capitol Hill, it became abundantly clear to me why research that examines quality in the absence of cost considerations is insufficient.

Possible solutions

  • Policy in all things. Nursing, medical, and health sciences programs typically include a single health policy course and/or rotation. Rather than relegating policy to just one course, why not see “policy in all things”? During OB-GYN grand rounds, why not discuss policy solutions that address maternal mortality? What keeps us from asking our psychiatric nursing students to debate mental health parity issues or veteran suicide rates? If we incorporate policy into every course, our students will leave their programs better prepared to bridge the divide between science and policy.
  • New definitions of scholarship. Historically, academia has viewed scholarship in narrow terms. For example, criteria for appointments, promotion, and tenure (APT) reward refereed journal articles and colloquia, yet these materials are not generally accessible or readily available outside of academic circles. To bridge the divide between science and policy, academics might consider adopting a broader definition of scholarship and creating incentives for deliverables that appeal to decision makers. Could we, for example, adjust APT criteria so that the process rewards policy papers, issue briefs, and congressional testimony equally? By encouraging scholarship that reaches decision makers, we would be optimizing the policy impact of our science.
  • Enhanced dissemination and outreach. Policymakers need the deep expertise that scientists and academics possess, but we are often siloed from one another. With rare exceptions, we tend not to attend the same meetings or conferences, read the same journals or books, or consume the same news or other media. I now realize that, for my work to inform policy, I need to reconsider how I package and disseminate my findings as well as how I position myself as a subject matter expert. By understanding and following key policy issues, learning how to communicate with policymakers, and investing time and energy in building relationships during times of calm, I will be facilitating swifter adoption of my science and more meaningful dialogue with policy staff when there is a critical need for information.

Dr. Kurtzman is a health services researcher and a tenured associate professor of nursing with secondary appointments in the university’s Milken Institute School of Public Health and Trachtenberg School of Public Policy & Public Administration. Her investigator-initiated research explores the impact of federal, state, and institutional policies on health care quality and the role of the health care workforce in achieving higher value care. She is currently exploring the impact of states’ cannabis policies on health outcomes including the consequences for pregnant women and their infants. 

Biomedical Informatics and Health Equity: Using One to Improve the Other

Guest post by Kevin B. Johnson, MD, MS, Cornelius Vanderbilt Professor and Chair of Biomedical Informatics, and Professor of Pediatrics at Vanderbilt University Medical Center.

I started Informatics in the Round for a lay audience seeking to understand the world of biomedical informatics. There are other podcasts out there about the latest and the greatest in research, but I really wanted to create a space where people could learn more about the field and hear from leaders who continue to inspire me.

Earlier this month, #ShutDownSTEM gave me the opportunity to bring together academicians and biomedical informatics leaders to outline what our role as informaticians should be in the fight against racism in all its forms. One of the leaders who joined me in that discussion and encouraged me to share this with all of you was NLM Director Patricia Flatley Brennan, RN, PhD.

I often refer to Dr. Brennan as the newly minted matriarch of our field. Her contributions to this recent discussion were, not surprisingly, incredibly insightful. The entire conversation can be found here.

As chair of the Department of Biomedical Informatics at Vanderbilt and an informatics evangelist, I want — no, I need — to share some highlights from this conversation in the hope of broadening the discussion. There is much we haven’t done that is clearly within both our skill set and reach.

Click on the image above to listen to the full episode.

How Bioinformatics Can Support an Equitable Future

I started the conversation by setting the stage for a discussion of how biomedical informatics can play a role in the fight against racism. As a medical specialty, the field is about aggregating and transforming health data to create knowledge, improve lives, and build a world with better health outcomes.

We’ve been an equal opportunity field that thinks of technology as the great equalizer when it comes to health care. But we’ve missed a key opportunity to embrace equity along with equality. In an equitable world, the benefits of informatics would not simply be made available to all equally; rather, we would recognize, embrace, and adapt solutions to the unique needs of the many in our society who cannot type, who don’t speak English, who fear giving out private information to the government because of historical missteps, or who have jobs that challenge our traditional care models.

To respond to the realities of our built environment, our field needs to understand where the people are and what they need. From a technology standpoint, this requires designing models that reflect more than just the average care needs. We need to build technologies based on an understanding of how diverse people are, as opposed to how similar we are. We need to think about the presumptions that we make, often unconsciously, and how our presumptions get built into technologies.

A challenge that we often face in the field of informatics is that we spend a lot of time on the technology side and don’t pay enough attention to the people side. Some call this the “softer side,” and it’s often pushed to the side with the intention to address it later. Unconscious bias can show up in very subtle ways, such as sending out a confirmation email and presuming that there will be a response or assuming that a patient even has a personal email address. And we often picture the nuclear family when we think about relationships.

We need to immerse ourselves in diverse stories and relationships so that we can see how technology fits into people’s lives and how to create tools to meet their needs. For example, how do we help young-adult graduates of the foster care system collect and summarize their past medical histories from what could be a dozen different parents? 

As we think about how health care systems are built and experienced, let’s take into consideration factors that impact who is represented at all levels of those systems. Our actions are rarely nefarious and are quickly corrected when called out as biased, in most cases. But, unfortunately, groups that lack diversity don’t have stakeholders who easily notice when actions leave underrepresented groups behind. Where is our diversity in science?

During our conversation, we heard difficult messages from two younger Black faculty. One expressed fear that the issues that might propel them into a career in data science and informatics were not issues that would be rewarded through extramural funding and promotion. Another was convinced that the perception of academia as slow to embrace change, skeptical of new ideas, and mired in red tape was off-putting to people of color who historically have seen those behaviors lead to discriminatory actions. 

Those are tough pills to swallow, but things we need to confront directly.

Throughout the conversation, we examined our privilege and how we can break down barriers and eliminate anti-Black racism with the goal of equity in mind. There is no single answer, but the best thing we can give to young people and to our colleagues is the capacity to be brave. We also discussed how people who experience privilege must be willing to use that privilege to build bridges and close the gap. We need to continue to be voices that say these issues matter.

As we strive for justice and meaningful change, we need to better inform ourselves about the perceptions of underrepresented groups that negatively affect their career choices. We need to narrow the research funding gap and examine the peer-driven study process, including biases in the review process and in publishing.

The National Library of Medicine uses grant mechanisms (G08, R01) to develop informatics to reduce health disparities and supports research that examines how information can be presented in culturally relevant ways. NLM’s data science work, including COVID-19 research, encourages researchers to develop techniques that illustrate the causes of and solutions to the health disparities that exist in the world today.

I encourage you to listen to the full discussion to hear more from our thoughtful panelists.  

And I leave you with this challenge: What will you do today, or this year, to build bridges and close the gap on your team, in your workplace, and in your community?

Dr. Johnson received his MD from The Johns Hopkins Hospital in Baltimore and his MS in Medical Informatics from Stanford University. He is an internationally known scholar and educator in clinical informatics, having served as a board-certified pediatrician and consistently funded researcher as well as chief information officer during his tenure at Vanderbilt.  

In addition to leadership roles in the American Academy of Pediatrics, the American Board of Pediatrics, the American Medical Informatics Association, and the National Academy of Medicine, Dr. Johnson serves as chair of the 
NLM Board of Scientific Counselors and sits on the NIH Council of Councils.

NIH One Step Closer to Speeding Delivery of COVID-19 Testing Technologies to Those Who Need It Most Through RADx-UP

This piece was authored in collaboration with the leadership across NIH and represents a unified effort to meet the challenges presented by the COVID-19 pandemic with excellence and innovation.

Before the nation can safely return to business as usual, it will be essential to develop and deliver effective and reliable COVID-19 testing and then implement it widely so that it is available to everyone. The NIH is rising to this challenge through the NIH’s Rapid Acceleration of Diagnostics (RADx) initiative — a national call for scientists and organizations to advance their innovative ideas for new COVID-19 testing approaches and strategies.

To speed innovation in the development, commercialization, and implementation of technologies for COVID-19 testing, NIH will use a variety of mechanisms, including extramural grants, contracts, and cooperative agreements, to move more advanced diagnostic technologies swiftly through the development pipeline toward commercialization and widespread availability — with the goal of making millions of tests available to Americans each week, especially those most vulnerable to and disproportionately affected by COVID-19.

To achieve this goal, NIH is partnering with other government organizations including the Biomedical Advanced Research and Development Authority (BARDA), the Centers for Disease Control and Prevention (CDC), the Defense Advanced Research Projects Agency (DARPA), the Health Resources and Services Administration (HRSA), and the U.S. Food and Drug Administration (FDA). 

RADx Underserved Populations (RADx-UP)

One of the four RADx components, RADx Underserved Populations (RADx-UP) will establish a network of community-engaged projects to improve access to and acceptance of COVID-19 testing for underserved and vulnerable populations who are disproportionately affected by COVID-19. This includes populations most affected by health disparities, particularly African Americans, Hispanics or Latinos, and American Indians/Alaska Natives; those in nursing homes, jails, rural areas, or underserved urban areas; pregnant women; and the homeless.

The overarching goal of RADx-UP is to understand the factors associated with disparities in COVID-19 morbidity and mortality and, ultimately, to mitigate them through enhanced access to or acceptance of testing. RADx-UP will utilize implementation science projects to learn how to increase uptake of viral testing and engagement with care in these populations, who are disproportionately affected by, have the highest infection rates of, or are most at risk for complications or poor outcomes from the COVID-19 pandemic.

Specific activities of RADx-UP may include establishing multiple clinical research sites across the country to conduct real-time evaluations of a variety of testing methods in specific populations, areas, and settings, as well as encouraging collaboration between the program sites and the community — such as tribal health centers, places of worship, homeless shelters, and prison systems — to identify and address their unique needs.

This initiative will also develop testing strategies to apply the technological advances emerging from the various RADx efforts in real-world settings.

The RADx-UP program includes four associated funding opportunity announcements.

The first funding opportunity is a limited solicitation targeting networks and consortia with established research infrastructures and community partnerships with underserved and vulnerable communities. The goal of this funding opportunity is to better understand COVID-19 testing patterns and implement strategies or interventions with the potential to rapidly increase reach, access, acceptance, uptake, and sustainment of FDA-authorized and approved diagnostics among vulnerable populations in underserved geographic locations. Proposals are due August 7, 2020. 

The second funding opportunity has a similar focus, but shifts the pool of grants eligible for supplements to individual research awards that include community-collaborations or partnerships to support COVID-19 testing, or that have the capacity to ramp up quickly, to reach underserved or vulnerable populations. Proposals are due August 7, 2020 and September 8, 2020.

The third funding opportunity addresses the urgent need to understand the social, ethical, and behavioral implications  of COVID-19 testing among underserved and/or vulnerable populations across the United States. The overarching goal is to understand factors that have led to disproportionate burden of the pandemic on these underserved populations so that interventions can be implemented to decrease these disparities. Proposals are due August 7, 2020 and September 8, 2020.

The final funding opportunity will fund a single organization to create a Coordination and Data Collection Center that will serve as a national resource, working with NIH scientific staff, and consortium members to coordinate and facilitate research activities across the programs supported by the funding opportunities identified above. Proposals are due August 7, 2020.

The other elements of RADx are:

  • RADx Tech (RADx-tech) to speed the development, validation, and commercialization of innovative point-of-care and home-based tests, as well as improve clinical laboratory tests that can directly detect SARS CoV-2, the virus that causes COVID-19. Led by the National Institute of Biomedical Imaging and Bioengineering, this fast track program leverages the Point of Care Technologies Research Network (POCTRN) to stimulate the development and commercialization of innovative technologies to significantly increase the nation’s testing capacity for SARS CoV-2.. 
  • RADx Radical (RADx-rad) to support new, non-traditional approaches, including the development of rapid detection devices and home-based testing technologies, that address gaps in current COVID-19 testing mechanisms. The program will also support new or non-traditional applications of existing approaches to make them more usable, accessible, or accurate. These may lead to new ways to identify the  SARS-CoV-2 virus as well as potential future viruses. Watch for new funding announcements from this program later this summer.
  • RADx Advanced Technology Platforms (RADx-ATP) to increase testing capacity and output by identifying existing and late-stage testing platforms for COVID-19 that are advanced enough to achieve rapid scale-up or expanded geographical placement in a short amount of time. These efforts will focus on scaling up technologies, including improving existing high-throughput platforms, to increase overall performance.

Want to Learn More?

If you are interested in learning more, NIH will hold two pre-application webinars. Registration is required

  • The first webinar will be held on Friday, June 26, 2020, from 2:00pm – 4:00pm EDT. This webinar will provide an overview of the RADx-UP initiative, followed by presentations on each funding opportunity (NOT-OD-20-119, NOT-OD-20-120, NOT-OD-20-121, and RFA-OD-20-013).
  • The second webinar will be held on Wednesday, July 1, 2020, from 3:00pm – 5:00pm EDT. This webinar will focus on questions for applications for the Coordinating and Data Collection Center in response to RFA-OD-20-013. Questions related to the other three FOAs will also be addressed.

During this period of heightened awareness about the ways social injustices contribute to ongoing health disparities, it is essential that agencies use their mission-focused efforts to understand and, where possible, ameliorate health disparities.

Please let us know how you believe we can better serve science and society.

Top Row (left to right):
Diana W. Bianchi, M.D., Director, Eunice Kennedy Shriver National Institute of Child Health and Human Development 
Patricia Flatley Brennan, R.N., Ph.D., Director, National Library of Medicine
Gary H. Gibbons, M.D., Director, National Heart, Lung, and Blood Institute
Joshua Gordon, M.D., Ph.D., Director, National Institute of Mental Health
 
Middle Row (left to right):
Richard J. Hodes, M.D., Director, National Institute on Aging
Jon R. Lorsch, Ph.D., Director, National Institute of General Medical Sciences
George A. Mensah, M.D., Division Director, National Heart, Lung, and Blood Institute
Eliseo J. Pérez-Stable, M.D., Director, National Institute on Minority Health and Health Disparities
 
Bottom Row (left to right):
William Riley, Ph.D., Director, NIH Office of Behavioral and Social Sciences Research
Tara A. Schwetz, Ph.D., Associate Deputy Director, National Institutes of Health and Acting Director, National Institute of Nursing Research
Nora D. Volkow, M.D., Director, National Institute on Drug

Graduation 2020: Tradition in the Midst of Change

Each year around this time, I’m invited to address a new group of graduates, to provide greetings and remarks at this important juncture in their lives. Over the years, I’ve sat in different parts of the commencement audience as a graduate, faculty member, parent, and speaker. It’s inspiring to listen to these speeches and a great honor to be invited to give one.

I’ve written before about the challenges of delivering one of these talks — to be inspirational, witty, and wise, all within nine minutes! Today, I want to talk about how graduation in 2020 is both different and not so different after all.

This year, so many things surrounding graduation — a ceremony marking the transition from learner to practitioner; a signal that the courses and tests and papers have all been completed, passed, and submitted; a celebration with the friends and family who accompanied the graduate on this journey — aren’t the same.

Social distancing and the larger response to COVID-19 meant an abrupt end to in-person classes and meetings with advisors for the last half of the spring semester. Coursework was completed in “distance mode,” through online discussions and video presentations. Tests evolved into computer-delivered multiple-choice questionnaires, with the ubiquitous empty box to be filled with the wisdom the student had acquired. Papers were submitted via email or uploaded to a course management website. And Zoom parties and video chats have replaced the hugs and handshakes that once marked the graduate’s accomplishment.

But how traditional are these “traditions” that 2020’s graduates are missing? Less so than we might think, I’ll bet. Over the last 50 years, graduation classes have become more diverse. The solemn pomp-and-circumstance procession has been replaced with joyful shouts of extended families and the sight of graduates’ small children wandering down the aisles.

And graduation ceremonies and celebrations have been cut short before for many reasons — both historical and personal — such as times of conflict, the necessity to enter the workforce immediately, or other family obligations, just to note a few. So just as graduation this year looks different, so too did graduation in 2001, in 1980, in 1970, and in 1950.

Graduation season this year is characterized by many trans-societal disturbances — a global health crisis, protests against systemic injustices, and vast economic uncertainty. The graduates of today will be called on to shape and serve a world that is deeply in need of their energy and expertise.

It’s not right to send them forth simply with an apology that the world isn’t like it used to be — there have always been uncertainties, challenges, and complexities. Instead, it is critical to remind graduates that the world awaits their skills and welcomes them to craft a path to a future of service and opportunity.

So my message to the 2020 Columbia University Department of Biomedical Informatics graduates, delivered via a 90-second live video instead of a 9-minute podium speech, applauded their accomplishments and expressed my deepest confidence that the world will be a better, healthier place because of their talent and training in biomedical informatics. As graduates of one of the 16 NLM-supported predoctoral and postdoctoral training programs in biomedical informatics and data science, these men and women represent a unique group of professionals equipped with the biomedical informatics and data science skills necessary to extract knowledge from data and return it to practice. 

I promised them, as I promise all of you, that the National Library of Medicine would travel beside the nurses, physicians, researchers, patients, and leaders of the future, serving as a consistent source of trustable knowledge about health, health challenges, and the technologies and information needed to advance health for all. 

What did you promise your graduate this year? 

The NIH Preprint Pilot: A New Experiment for a New Era

Guest post by Kathryn Funk, program manager for NLM’s PubMed Central.

Over the last several months, we have seen an increase in demand from the research and library communities for broader discovery and distribution of COVID-19 related literature, including early results posted as preprints. Preprints are complete, public drafts of scientific documents that are not yet peer reviewed. They are playing a key role in accelerating dissemination of research on the SARS-CoV-2 virus and COVID-19.

Recognizing the growing interest in preprints, NLM is today launching the first phase of the NIH Preprint Pilot, which will test the viability of making preprints searchable in PubMed Central (PMC) and, by extension, discoverable in PubMed, starting with COVID-19 preprints reporting NIH-supported research.

To be clear, NLM is not building a preprint server for NIH investigators, nor are we developing a comprehensive preprint discovery resource. Rather, through this pilot, we plan to add a curated collection of preprints from eligible preprint servers to our established literature resources. In doing so, our goal is to improve scholarly communications by accelerating and expanding the findability of NIH research results.

With the encouragement of NIH leadership, NLM has been exploring ways to leverage its literature databases to help accelerate the discoverability and maximize the impact of NIH-supported research via preprints. The planned pilot builds on guidance released by NIH in March 2017, which encouraged NIH investigators to use preprints and other interim research products to speed the dissemination of research and enhance the rigor of their work through public comments and new scientific collaborations.

Interest at NIH in the potential of preprints to improve scholarly communication long predates the 2017 guidance. As author Matthew Cobb recounts in “The prehistory of biology preprints: A forgotten experiment from the 1960s,”Errett C. Albritton, an administrator in the NIH Office of Research Accomplishments, established an informal network for the circulation of preprints and other scholarly communications by post to the group’s members. Although this initial “experiment” ended in 1967, support for the open sharing of scientific knowledge has continued at NIH through efforts such as the NIH Public Access Policy, which this pilot seeks to now complement.

Phase One Focus: COVID-19

In the first phase of the current pilot, NLM will make use of the NIH Office of Portfolio Analysis COVID-19 Portfolio tool to help identify preprints relating to the SARS-CoV-2 virus and COVID-19 pandemic. NLM will select preprints that either list an NIH-affiliated author or acknowledge NIH grant support. To accelerate discovery, preprints will be loaded and made searchable in PMC and PubMed once identified as in scope, without additional processing.  Standard XML versions will be loaded once the conversion process is completed. This workflow allows for rapid inclusion of preprints in the pilot without asking NIH investigators to separately submit them to PMC.

Recognizing that users come to NLM resources with varying levels of familiarity with scholarly communication practices, we want to make sure that researchers, clinicians, and the public can easily distinguish between preprints and peer-reviewed journal literature. Preprint records in PMC and PubMed will be flagged with large banners that clearly identify them as preprints. The banners will explain that the papers have not been peer reviewed and link to information about the pilot for additional context. Those who want to view only peer-reviewed journal literature will be able to exclude preprint records from search results in PMC using newly created filters.

We’ll closely monitor the early outcomes of the first phase of the pilot as we test and refine our workflows. We hope to be able to expand our scope in the next phase of the pilot to include the full spectrum of NIH-funded research, allow NIH investigators to identify their preprints through simplified reporting in My Bibliography, and establish more automated and faster curation workflows.

NLM will continually monitor the impact of the pilot on the scholarly communications landscape, including how research results are shared, discovered, disseminated, and reported, and evidence of increased awareness and emerging best practices around preprint sharing.

We expect the pilot will run for a minimum of 12 months to give us sufficient time to examine the use of preprints and their importance to scholarly communications in biomedical science. Feedback from stakeholders and lessons learned will inform future NLM efforts related to preprints.

PMC turned 20 in February, and its story over those two decades has been one of innovation, evolution and expansion, as we strive to build a collection at NLM that represents “the intellectual content and diversity of the world’s biomedical literature, data, and other research objects and information” and to foster open science practices. In launching this new preprint experiment in PMC, with an initial focus on COVID-19-related preprints, NLM hopes to continue to accelerate and expand access to relevant research in response to the ongoing public health emergency response efforts and to learn more about the impact of accelerated discovery and open sharing of research results on scholarly communications.

Tell Us What You Think!

We encourage you to learn more about the NIH Preprint Pilot and review the pilot overview and related FAQs.

As this new experiment unfolds, please feel free to send feedback to pmc-preprints@ncbi.nlm.nih.gov.

casual photo of Kathryn Funk
Kathryn Funk is the program manager for PubMed Central. She is responsible for PMC policy as well as PMC’s role in supporting the public access policies of numerous funding agencies, including NIH. Katie received her master’s degree in library and information science from The Catholic University of America.