In 1986, Lorenzo Odone was diagnosed with Adrenoleucodystrophy (ALD), a genetic disease that progressively destroys the brain cells of young boys. The disease was considered incurable, and Lorenzo was given less than two years to live. His parents refused to accept this verdict, and despite no scientific training, they effectively took up residence at the National Institutes of Health’s National Library of Medicine (NLM) in hopes of discovering a cure. They eventually found information in some obscure journals that helped them and their doctors to develop what is commonly known as Lorenzo’s Oil. The treatment significantly extended their son’s life and has been effective in reducing the appearance of the symptoms of the disease in children with the ALD gene.
Access to the National Library helped make the discovery of Lorenzo’s Oil possible. Now, thanks to the work of Dr. David Lipman and his team at NLM’s National Center for Biotechnology Information (NCBI), this world-class research facility’s archive of biomedical literature has been modernized for the digital age, creating countless possibilities for new scientific discoveries. In 1997, Dr. Lipman, along with Vice President Gore and Senators Tom Harkin and Arlen Specter, launched PubMed, a free online service that allows the public to search abstracts from approximately 4,600 of the world’s leading biomedical journals. This service revolutionized access to medical information, with usage rising from approximately 7 million searches per year to about 1 billion now.
Being able to search one of the world’s most comprehensive archives of medical literature is an extremely powerful research tool, but Dr. Harold Varmus, the NIH Director at that time, and Dr. Lipman wanted to go even further and provide free online access to the full text of journal articles. In 2000, NCBI launched PubMed Central, a digital archive that makes the published results of biomedical research available to the public in a full-text, fully searchable form via the Internet. Dr. Lipman also led the effort to integrate this biomedical literature with a variety of other information resources, including GenBank, the world’s largest genetic sequence data repository, and PubChem, a resource that connects chemical information with biological studies — innovative NIH databases also developed under Dr. Lipman’s leadership.
Dr. Lipman was not just motivated by practicality. He was driven by possibility.
Few enterprises depend more on collaboration than scientific research. Virtually every new breakthrough builds on the discoveries of other scientists. One of the most effective ways to spur discovery is to create mechanisms that allow researchers to easily access scientific literature and cross-reference it with relevant scientific information. PubMed Central represents a significant advance in enabling such access.
Dr. Lipman began laying the foundation for PubMed Central’s creation in 1999. His team had to develop the necessary tools to allow storage, rapid searches and barrier-free access to biomedical research reports.
When it first launched in 2000, a number of leading journals made the full text of their articles available in the database. Many other prestigious journals have since followed, and PubMed Central now has 1.7 million articles. Perhaps the greatest testament to the value of this resource is the phenomenal amount of traffic it has attracted. Each day, users retrieve about 650,000 articles, making it one of the most important sites in the world for finding quality biomedical information. This database will grow larger and more useful in the coming years thanks to Dr. Lipman’s vision and to the leadership of the U.S. Congress, which recently enacted legislation to ensure that all articles resulting from NIH funding will be deposited in PubMed Central.
Again, the power of PubMed Central is not only that it makes this research available, but that the archive is interconnected with other biomedical and life sciences information. This ingenious system of databases is a critical component of NIH’s strategic efforts to speed discovery of new medical treatments and get scientifically reviewed information in the hands of doctors and patients.
Dr. Lipman has allowed scientists, physicians, patients, advocates, students, teachers, journalists and others to access information that affects their lives and work. This work has enhanced collaboration and, as a result, is revolutionizing scientific research and speeding the translation of existing knowledge into new breakthroughs.