Published On September 12, 2016
THE TIME AND EXPENSE REQUIRED TO RECRUIT SUBJECTS for clinical trials, collect the data and then analyze it are extraordinary. Yet all too often, this hard-won data remains hidden. There are a number of reasons for this unfortunate reality, most of which can be summed up by the familiar catchphrase of academia: Publish or perish. Because of the fierce competition for funding and acclaim, scientists often sit on data to avoid being scooped by others, to wring as many publications as possible out of a study or to patent discoveries stemming from the data. Worse, some data is shelved forever. Perhaps the scientist’s hypothesis didn’t pan out, or the drug or device being tested didn’t work. Such negative results rarely find their way into medical journals. In addition, some scientists may fear that competing researchers, in performing their own analyses, will point out errors.
Yet a rising chorus within the research community contends that this defensiveness is unnecessary and profoundly detrimental to progress, not to mention disrespectful to the thousands of trial subjects who have given of themselves in hopes of contributing to a cure for disease. Government agencies in the United States and Europe have taken some steps to require that data be shared, and even pharmaceutical companies are jumping aboard the “open data” movement. As regulations tighten, researchers will need to become accustomed to sending their raw data out into the world. As for their worries about being scooped or challenged, Senator Elizabeth Warren of Massachusetts, in an August 4 editorial in The New England Journal of Medicine, sought to assuage them: “I urge researchers with concerns about academic credit or a new way of doing things not to lose sight of the bigger picture: transparency and reanalysis of data are core practices of rigorous, peer-reviewed research, and increasing access to data will ultimately strengthen—rather than erode—these practices.”
Sharing knowledge as an important pathway to innovation and discovery is the philosophy behind HUBweek, a seven-day festival of ideas being held here in Boston for the second year. Founded by Massachusetts General Hospital, MIT, Harvard and The Boston Globe, HUBweek will showcase bright ideas at the intersections of art, science and technology. The festival will feature more than 70 organizations and is expected to draw more than 50,000 participants. With so many brilliant and curious people coming together to think, learn and solve problems, HUBweek can serve as a catalyst for technological progress—and a window into the value of scientific transparency.
Peter L. Slavin, M.D.
Massachusetts General Hospital
Thomas J. Lynch Jr., M.D.
CEO and Chairman
Massachusetts General Physicians Organization
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