Valerie Florance, PhD, is Director of Extramural Programs (EP) for the National Library of Medicine (NLM). Blending background experience from medical anthropology, medical libraries and biomedical informatics, she is as multi-faceted and leading edge as the NLM division she heads. Extramural Programs provides funding to people and organizations studying how computers and telecommunication technology can improve the way we store, retrieve, access, and share biomedical information. Dr. Florance completed her doctoral studies in information sciences at the University of Maryland. She came to the NLM in 2001. She spoke with NLM in Focus writer Christopher Klose about the NLM grants program.
What is the goal of NLM’s extramural programs?
We support the goals of the NLM long range plan through grants for training, research and development. Grants are offered in the broad area of biomedical informatics, which encompasses application areas such as health care, public health administration, the computational support of biological research, the translation of research findings to practice, and the use of information by the public. Simply put, we apply computer and information science to the everyday information problems facing clinicians, public health administrators, biomedical researchers and consumers. The goal is to support great ideas that can ultimately make a difference in the health of the public.
Could you give me an example?
Yes. Health literacy—practical understanding of how the body works, and about disease—is critical for understanding post-hospital care instructions. One of our extramural researchers is working to develop a graphic, visual language for patients who can’t read or who may not speak much English. This follows other, earlier research with doctors, scientists, consumers and public health administrators that led to a plain-English vocabulary of the body’s parts and processes.
Given the rapid advance of technology, has there been a corresponding rise in demand for biomedical informatics?
In my ten years at the Library, the interest in biomedical informatics, and what it can produce, has skyrocketed. It has flowered in many directions to become increasingly important in every sphere of health. NLM was once the dominant source of informatics research funding at the National Institutes of Health (NIH). Now, many other NIH Institutes offer informatics-related grants that focus on their particular mission area.
Where is the field heading?
NLM has funded and shaped the education, training and advances in biomedical informatics nationally for more than 30 years. In early days, the emphasis was on organizing electronic data, information and knowledge into useful, usable systems. One hot area of basic biomedical research today is to link genomic information from the Human Genome Project with phenomic information, which is the specific individual information about systems of the body and how disease affects them. With this computational mapping in place, the next step is the design of personalized drug and treatment regimens. Another hot topic for informatics is developing computational approaches to understand the relationship between environmental factors and human health. There is also considerable work going into intelligent computer systems that can support clinicians and patients who are trying to make health decisions.
Currently there exists no good functional computational model of a human being to show how information passes up and down the cells and body systems. However, it is now possible to use anonymized health data from electronic health records to create electronic patient avatars, to conduct clinical trials at warp speed, or to do clinical trials of rare diseases, which are difficult to undertake due to the small number of available cases.
The genius lies in how to apply what we know about computers and information to discover ways to improve health.
What is your focus?
NLM’s grant programs have a unique focus at NIH: the generation, management, dissemination and everyday application of information to increase understanding and improve health outcomes. In emphasizing research and demonstrations of how health-related knowledge, data, and information can best be captured, organized, integrated, mined, analyzed, disseminated and used, they complement the NIH mission.
Where do medical librarians fit in?
There are many roles that medical librarians can, and do, play in biomedical informatics research as researchers, project managers, and information experts. Their contributions are invaluable. This is no surprise because expertise in the capture, organization, management and delivery of information is fundamental to the field of library science.
How do you measure a grant’s success?
The first aim of any grant is completion of the stated goals: for a researcher to prove an assertion, undertake an experiment, test a new approach, and so on. However, to measure success, we need to move beyond accomplishments to outcomes. Scientific publishing—peer-reviewed journal articles sharing the results of a project—is used by granting agencies as an outcome measure because it represents the generation of new knowledge. In 2010, NLM grantees authored 261 peer-reviewed articles based on their NLM-funded research. Patents obtained is another indicator that can be used to assess outcomes. And many of our researchers develop techniques, applications, open source software, or Web-based resources used by others. Finding a metric that accounts for their contributions is also very important. Tying informatics innovations to long-term improvements in health is a future goal, once we have good metrics for primary outcomes. For example, most people in biomedical informatics would credit NLM with advancing the development of electronic health records, but what is the best way to show this?
What types of grants are available?
There are five categories offered by NLM: research, resource support, career development, training, and small business research and development. They cover a wide array of basic and applied topics, and are open to public and private organizations, institutions and individuals.
How many grants are awarded each year?
It varies, depending on existing commitments and the amount we have to spend. In 2010, we made 185 awards, totaling almost $50 million in appropriated funds for a mix of new and continuing grants. For example, 65 of those were R01 research project grants, of which 17 were new awards. During 2010, we also made 41 new awards with $ 37 million from the American Recovery & Reinvestment Act (ARRA).
The EP budget always includes the costs of the National Network of Libraries of Medicine (NN/LM). In 2010 for example, this amounted to $11.6 million, almost 19 percent of the EP’s $61.6 million budget.
Who awards the grants—an NLM group or outside panel?
The EP Division is the only part of NLM authorized to award grants. We have a three-step review process that all NIH Institutes and Centers must follow before a grant is awarded: peer review, council review, which is done by the NLM Board of Regents, and payline meeting, at which final award decisions are made.
Who is a typical trainee?
Around 250 people are in training at any time. Our training programs prepare people for research careers in biomedical informatics. About two-thirds are pre-doctoral students, and one-third post-doctoral fellows. An evaluation covering1990-2005 found that:
• About 60 percent were men, and that has remained constant;
• At entry, 52 percent of the doctoral students had BS degrees, and 43 percent had masters degree of some kind; two-thirds of the post-doctoral trainees are MDs or MD/PhDs;
• Of the trainees who graduated during that period, the majority chose careers in academia, business or industry, others chose to enter healthcare, the government, or take additional training;
• About 60 percent of our trainees publish articles during their training period.
Could you give me an example of a small business R&D awardee?
Yes. There is Religent, Inc., a North Carolina information services company, which is in the second phase of a NIH Small Business Technology Transfer (STTR) grant with Duke University to perfect a decision-support tool named Sebastian. (Such tools are computer-based, interactive software systems that combine everything from raw data to documents to personal knowledge to help a physician identify and solve problems.)
In the first phase of Sebastian, the product was integrated into Duke University Health System’s primary clinical information system to provide point-of-care decision support on diabetes management to clinicians. The second phase aims to convert Sebastian from a software application used within an academic health system to a product that can be deployed in diverse settings, including a regional health information organization. More information about this and other small business grants can be found on the EP Web site.
Do other organizations contribute grant funding?
Yes, other organizations within NIH or the federal government do contribute funds to NLM grant awards. They are recognized in NLM’s annual report, in the EP section.