Diseases spread in weeks. Epidemic research takes years. This must change

http://www.theguardian.com/commentisfree/2014/jun/10/diseases-epidemic-research-outbreaks-ebola

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In 1976 a thermos of blood from a Flemish nun who had died in Zaire arrived at the Antwerp lab where Peter Piot, the great microbiologist, was training. Tests soon revealed that the cause of death was not, as suspected, yellow fever. It was a new and extremely deadly virus: Ebola.

Later that year Piot travelled to Zaire where he played a key role in containing the Ebola outbreak that killed 280 of the 318 people it infected. This spring, as he retraced his journey in what is now the Democratic Republic of Congo, another Ebola epidemic began to sweep through Guinea. The death toll passed 200 last week.

In the 38 years separating these epidemics, methods for containing Ebola have been standardised. Yet our knowledge of how to treat patients or develop a vaccine has not moved on at all. It is still a matter of quarantine and safe funerary practices: shut you away and bury you nicely. These remain the most effective public health tools we have, but also the bluntest and most brutal. Can it be right to rely on them still? Is it ethical to have made no progress because these epidemics affect people far away from the centres of political gravity?

It is easy to think of Ebola as an outlier, a rare and exotic disease that is particularly hard to learn about due to the sporadic nature of its outbreaks, the remoteness of the communities it affects, and the difficulty of containing transmission from its animal hosts. There are also ethical issues with research where informed consent can be hard to achieve. These factors do make it a difficult virus to understand. But before we rest too easy we should not think we have made much progress with many other infectious diseases that pass much closer to the world's centres of medical excellence.

We have become better at identifying the start of epidemics, observing their passage, measuring their impact, charting their spread and counting the bodies. But too often we've left it at that, as if improved surveillance can do the job alone. We have to do better. We need to move towards better treatment and understanding of what to do when the alarm is raised.

Flu is a prime example. In April, a Cochrane Collaboration review suggested that oseltamivir (Tamiflu) is not a clinically effective treatment for influenza. The researchers argued that hundreds of millions of pounds spent by governments on stockpiling the antiviral for pandemic defence had therefore been wasted. There are methodological questions over the Cochrane approach, which refused to consider observational studies that may have indicated important benefits. But the review raised a substantive point that stands: there is far too little reliable prospective evidence about whether this frontline approach to flu works. We do not know which drug to use, which patients to treat, which dose to use or for how long.

Why is this still so? Influenza occurs every year, and in 2009, when Tamiflu had already been stockpiled, we experienced H1N1 swine flu. With 1.5 billion people infected it ought to have presented an ideal opportunity to investigate the effectiveness of Tamiflu, and the best ways of making it effective, in real world conditions. Yet this important research was not done. The scientists who wanted to conduct it ran again and again into bureaucratic brick walls.

When an emerging infectious disease strikes, such as the Middle Eastern respiratory syndrome (Mers) circulating in Saudi Arabia, the first wave of infection can whip through a population in just a few weeks. Yet a 2011 study by the Academy of Medical Sciences found that it takes an average of 621 days between launching a trial and treating the first patient. The delays come from the bureaucratic challenge of securing multiple ethical approvals for trials, and putting contracts between institutions in place. These mostly duplicate one another without enhancing patient safety.

This bureaucracy has a noble motive: medical ethics matter, which is why the Wellcome Trust invests heavily in the field. But we have over-complicated clinical research with a thicket of approvals and contracts that do little for patients or communities. A doctor who observes an interesting treatment effect at the bedside, and wishes to research it, must write hundreds of pages of trial protocols and engage in dozens of meetings and conference calls before the study can begin. The challenges grow still more acute for international research – and viruses, bacteria and parasites do not recognise borders.

We need research to get smarter and more nimble. The UK has moved in the right direction by introducing a single Health Research Authority and more streamlined approvals. But we also need pre-approved, harmonised, open access study protocols that can spring into action as soon as an epidemic arrives; we need more innovation in the design of research that maximises its value; we need to ensure that all research is published and disseminated immediately. In short, we need a new paradigm for clinical research that allows us to learn from public health threats as we tackle them. Without it we will continue to miss opportunities to save lives.