It was the summer of 1982 when the esteemed evolutionary biologist and science communicator Stephen Jay Gould took on another career; as a patient. He was being diagnosed with a deadly cancer of the abdominal lining. The first thing he did after the diagnosis, or rather as soon as he could walk again? Heading over to Harvard’s medical library to figure out what his personal chances are. In his moving essay The Median isn’t the Message Gould himself describes how knowing the statistics behind his diagnosis gave him hope. A lot has changed since 1982: Over half of the world’s population now has access to the internet and patients around the globe are using that access to educate themselves. Individual patients can now mine the scientific literature, band together to collaborate and do their own research. These well-informed patient experts thus gain agency in their own treatments, democratizing medicine.
Unfortunately, a thing that has not changed much is who has the opportunity to actually become an expert in their own disease. Unlike Gould, most patients don’t have the privilege of having access to the Harvard Medical library or its electronic equivalents. Instead, their search for biomedical literature more often than not ends in front of paywalls, requesting significant amounts of money to get access. It is thus not surprising that a large number of biomedical publications are accessed through Sci-Hub by people not located in universities and based in in lower income countries. But Sci-Hub cannot (and should not) be a long-term solution to this problem. Researchers have an obligation to open up their findings to their audience. An audience that increasingly includes patients who are rightfully demanding access to the biomedical literature that directly concerns them.
With the global scientific output doubling every nine years, finding relevant clinical research is getting increasingly difficult. As a consequence, efficient ways of sifting through the whole body of scientific publications become more and more important. Mining the scientific literature – for data as well as publications – is already needed to help researchers to stay informed about their own field. Patients, who are often confronted with a given disease for the first time, have an even greater need for this when starting their own literature research. Only open access can enable appropriate text mining, with the full-text being technically and legally searchable for all purposes. On the scientific research side this leads to the creation of new knowledge from the scientific body, facilitates discoverability and a use of literature over discipline boundaries. But it also enables patients to put the scientific literature to better use, as it allows to create tools that target their specific use-cases. To truly achieve a democratization of medicine, that takes along all interested individuals, we will have to make sure that open is our new default.
This post was written by Bastian Greshake Tzovaras. Bastian is interested in all things open*. He is the co-founder of openSNP – an open human genetics repository that not only hosts data but also mines the scientific literature to link genetic variants to traits & diseases. He furthermore is the Director of Research for the individual-centric participatory science project Open Humans.