Johnson & Johnson recently won praise for making its clinical trial data available to scientists around the world. Yes, the same company that makes your baby shampoo and BAND-AIDs® has a robust pharmaceutical segment, where they conduct research across oncology, infectious diseases and neuroscience.
Historically, pharma companies have judiciously selected what data to publish and have held other results private. In their defense, they paid to collect and analyze it, and it is their right to share conclusions at their own discretion. But that scientific secrecy costs companies — by encouraging others to keep their own, valuable findings to themselves, too — and, most of all, harms patients by slowing progress.
On February 2, Harlan Krumholz, MD, director of the Yale University Open Data Access Project (YODA), which assisted Johnson & Johnson in the release of its data, wrote an opinion piece for The New York Times. Of the current landscape, Harlan wrote, “As a result, evidence-based medicine is, at best, based on only some of the evidence. One of the most troubling implications is that full information on a drug’s effects may never be discovered or released ... End users of research — patients, doctors and policy makers — are implicitly told by a single group of researchers to ‘take our word for it.’”
With this emerging trend of open access, however, by allowing others to dive into their “failures” or their less convincing data, Johnson & Johnson and other companies such as GlaxoSmithKline and Medtronic are helping others avoid the same mistakes. Additionally, a new perspective on those so-called failures may find something new and promising.
Matt Herper wrote on his Forbes blog about Johnson & Johnson’s announcement, too:
Here’s how the process will work: J&J has enlisted YODA to review requests from physicians to obtain data from J&J products ... If YODA approves a request, raw, anonymized data will be provided to the physician. That includes not just the results of a study, but the results collected for each patient who volunteered for it with identifying information removed. That will allow researchers to re-analyze or combine that data in ways that would not have been previously possible.
The Michael J. Fox Foundation has been leading the open-access movement in the studies we fund and even more so in those we sponsor ourselves. Grantees are required to share study outcomes, which we make public on our site regardless of their positive or negative result. The Parkinson’s Progression Markers Initiative and BioFIND biomarker studies make de-identified data and biological specimens available in real time to qualified researchers. Taking it a step further, MJFF requires approved investigators to share analyses of these datasets and samples back with us so that future researchers can build on the findings of their peers. In addition, we’ve organized other consortia and studies willing to share their data, too, to make it easier for interested researchers to find what they’re looking for.
Harlan wrote, “There are many benefits to this kind of sharing. It honors the contributions of the subjects and scientists who participated in the research ... And it enables scientists to use the data to learn new ways to help patients.”
We, too, believe in the enormous power of public data and the impact such sharing can have on treatment breakthroughs for patients, and we hope more companies will follow suit and join in this new age of transparency.