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....
Family history in women with heart disease, unexpected media coverage and a new model for research communication
The last couple of weeks have taught me a lot about how clinical research gets published and disseminated. On 1st February, our article, titled, “Familial History of Stroke Is Associated with Acute Coronary Syndromes in Women”, was published online by Circulation Cardiovascular Genetics prior to print. This is one of the subspeciality journals of “Circulation”, a publication aimed at scientists generally interested in cardiovascular medicine and research. Over the last few years, several of the major journals have increasingly multiplied into “sub-speciality journals”. For example, “Lancet” has spawned “Lancet Neurology”, “Lancet Infectious Diseases” and “Lancet Oncology”. Not only are the journals able to publish more specialised research that might have been rejected by the parent, general journal; they can also charge more for subscriptions, reprints and so on.
Interestingly, even as an author, I did not receive a copy of my manuscript and do not have access to the journal article, unless I pay for access or buy a reprint. So I will tell you what the gist of the research is. Basically, within the Oxford Vascular Study, a much studied cohort of 90 000 patients from the Oxfordshire general practice population, we looked at about 1000 patients with stroke and about 1000 patients with heart attacks.
Previous analyses from the same study have shown that women with stroke are twice as likely to have female relatives with stroke as male relatives with stroke. In addition, young women with heart attacks are twice as likely as young men with heart attacks to have mothers with heart attacks. Therefore, mother-to-daughter transmission seems to be important. For this reason we looked at family history of stroke in detail among patients with acute coronary syndromes (heart attacks and “unstable angina”).
Firstly, we found that family history of stroke is as common in heart attack patients as stroke patients. Secondly, women with heart attacks were twice as likely to have history of stroke in their mother as in their father. Thirdly, when we looked at the coronary arteries (which supply the heart) directly using coronary angiography, family history did not predict the location of the coronary artery disease or how severe it was. We concluded that family history of stroke needs to be studied in more detail and may well be important in better identifying women most at risk of heart attack, since women are less likely to be picked up by current risk prediction tools used by doctors. Also family history probably has its effect via influences on clotting rather than on arteries directly, given our lack of correlation with disease on angiography.
I spoke with only 1 freelance American journalist and helped write 2 press releases in the week before the article went online. On 1st February, I received an e-mail from the University that the article had been picked up by news brokering websites from Reuters to Yahoo, newspapers and TV from Canada and the Phillippines to India, South Africa and the UK tabloids. I don’t mind telling you I was surprised by all the interest! Even BBC Radio 4 contacted me to go on Woman’s Hour.
I have taken three lessons from this experience. First, a journal article will probably be read by almost nobody, primarily because it is published in a journal, and secondly because access to that journal requires money. Second, although research is published in journals, the immense speed and penetration of the global media/internet machine (based in this case on 3 interviews or press releases!) have led to the devolution of the dissemination of research findings away from journals, even though journals may be the trusted source of the original research. Third, as scientists, if we want our research to be understood by the broader public, then we need to do more than publish articles in journals, we must engage with the media and with the public. Both doctors and patients are more likely to use internet search engines than journals so we have to make sure that Google is well-informed, otherwise a great opportunity for health communication will be missed.