Knowledge is power but should it be free?
I spent last night eating and drinking with two old friends who happen to be web programmers. It is fair to say that we have a lot to learn from the way they share knowledge, and our evening’s conversation made me feel very uncomfortable about the whole medical research machine.
The origins of the internet lie in sharing of information among like-minded individuals, initially scientists. Much of the protocols, programming, infrastructure and software of the internet rely heavily on web programmers not to patent their ideas and to make them available to the broader public. Ideas and innovations are often introduced for free and programmers and experts evaluate, give feedback and improve ideas. Although Bill Gates and many others have hugely profited from various aspects of mushrooming of IT in the past few decades, imagine a world where we had to pay per e-mail, or pay for the right to write this very blog which you are currently reading! Open knowledge and an ethos “for the greater good” ensure this culture.
In medicine, the two major types of knowledge we share are innovations (most commonly of drugs or devices) or research studies (from basic science to epidemiology, from animal studies to patient studies). The way in which these new types of ideas are shared or disseminated is generally through publication in peer-reviewed journals, which are either subscription only, or open-access. Subscription-only journals involve a cost to readers and open-access publication involves a cost to the author or their institution. Subscription-only journals have started releasing certain articles as open-access. The cost is justified by the cost of peer review and the cost of publication.
The balance of medical research is very much tipped in favour of intellectual property rights rather than open information. Sharing of data is relatively uncommon, either because of fears of “data theft” or due to conflicts of interest, particularly in industry-funded studies. The conclusions of the research are heavily influenced by the way in which the research is funded and there is good evidence that researchers and clinicians can be influenced. Open-access datasets are a relatively new and evolving concept.
Research careers and progression are still very much judged by the publication model: “publish or perish” and often only indirectly by ability of knowledge to change practice and change norms. Although clinicians and researcher are driven by the Hippocratic oath and wanting to do good for patients, the current research model is often too investigator-driven or funding body-driven and only relatively recently have the end users (the patients) been involved in designing and prioritising research. The current global interest in the Polypill is an example of how different research institutions around the world are competing to gain the accolade of being the first to conduct the first trial of the Polypill. All the Polypills being suggested use generic drugs, but they will all be patented and promoted as new entities. Imagine if the different research groups worked together with “open Polypill” technology and the Polypills remained generic.
I was asked for examples of medical research where researchers put open access to knowledge before their own interests. Three examples came to my mind. Firstly, defibrillation as a process has never been patented. Secondly, oral rehydration therapy was originally trialled to treat cholera in Bangladesh and has been used to treat hundreds of millions of people with diarrhoea and dehydration worldwide without patent of process or the product. Thirdly, the results of the Human Genome Project are being made gradually openly available. Let me know of the other examples that must exist so that I can defend medical researchers better next time....