Ethics in media and medical research-reflections after the phone-hacking scandal
It is impossible to avoid the outrage and scandal of the News of the World if you were in the UK this week. One media organisation went too far in its pursuit of sensitive data by tapping phones, and there have been hourly revelations since then, revealing a much greater system problem. Has the media lost its way? Yes it has. The “big scoop” has become more important than respect for individuals and their lives, and the right to know has trumped the right to privacy.
As the scandal crosses the Atlantic and more people lose their jobs, the last few days made me reflect about analogies between the media and medical research, and possible lessons for EBM. Like the news headline writers, data is the major part of what medical research is about as well. It is sensitive data because the content is health information of patients. Thankfully, medical research has to go through multiple levels of ethical review before it is carried out and perhaps the rather lame Press Complaints Commission needs to be replaced with a proper code of ethics for journalism and a body that can enforce it.
The history of medical research has had plenty of ethical issues and scandals which have largely led to improvements in guidelines and the way in which research is conducted. Perhaps most importantly, the involvement of Nazi doctors in unethical research during the Holocaust led to the establishment of the Nuremberg code: ten principles of ethical conduct in medical research in 1949. The World Medical Association developed the Declaration of Helsinki to guide the medical research community regarding human experimentation. But scandals still continue to happen. The impact of Andrew Wakefield’s bogus Lancet paper about MMR has led to huge consequences for childhood immunisation across several countries. Conflicts of interest in research and clinical practice have led to inappropriate regulation of medical devices.
Medical researchers have the privilege of working in fields where their findings can genuinely impact human lives, and ethical research can be done in every area of medicine to make treatment and the patient experience better, even in end-of-life decisions in the intensive care unit.
As a researcher with an interest in epidemiology, a lot of my work involves using patient databases to formulate and test hypotheses. The aim is not “to publish or perish” and get as many papers from the data as possible, and nor is it financial reward. We as researchers should always remember why we are doing what we do: to discover more about health and disease in order to improve outcomes for patients.
Avoidable Waste in research
It’s always a pleasure to listen to Sir Ian Chalmers but the topic of choice at SAPCprimary care conference is to irresistible to not blog about.
Most of you reading this blog will be involved in doing or reporting research: it seems you may be wasting a lot of resources. If you aren't involved in research then you may want to know, why does so much effort go to waste?
If you are an epidemiologist then the four questions you would want to ask are published some time ago by Austin Bradford Hill
1. Why did you start?
2. What did you do?
3. What answer did you get?
4. What does it mean?
If you can’t answer these questions about the research you are doing then it seems you should go back to the drawing board.
Part of the solution is to create better questions, relevant to patients, and developed by patients. You may be surprised that a resource to make uncertainties explicit and to help prioritise new research is actually available. It is called DUETs. It has been established to ‘ publish uncertainties about the effects of treatment which cannot currently be answered by referring to reliable up-to-date systematic reviews of existing research evidence’.
I am continually frustrated with the amount of guff published in the media about the latest ‘dramatic health cure’, Yet an imitative like DUETS never gets a jot of news space. However, this initiative is unlikely to away, and at some time in the future it is likely it will pervade all aspects of research.
The key take home messages are: there is substantial avoidable waste, research should address known uncertainties and engagement of patients and the public is essential.
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....