Apr 28 2011
We are in the middle of a social-media revolution, which is rapidly changing the way we access information and engage in public discussion. The change is still incomplete, and all the ramifications are not yet clear – but that change is happening rapidly is clear. Scientific and health care institutions in particular are struggling to deal with these changes, to take advantage of them while not being buried by them.
In the past, to a large extent, scientists would largely talk with each other through journals and meetings, and only when scientific ideas reached a certain threshold would the media and the public take notice. But increasingly social media are allowing for the public to peek at the backroom process of science. Climategate is one example of what can happen when the candid comments of scientists (in this case via e-mail) are leaked to the public. While it seems there was no actual wrongdoing, the e-mails created a scandal that affected the public’s confidence in climate science.
More recently an internal memo among scientists at the Large Hadron Collider (LHC) was leaked, leading to rumors that the Higgs boson had been discovered. But this was a very preliminary interpretation of results, the kind that happens frequently but had yet to be verified. This was just part of the noise of day-to-day research that would normally not filter through to the public attention.
In addition to the reporting of scientific findings, there is also the issue of deciding research priorities. Traditionally such decisions are made in backrooms with scientists and experts carefully evaluating the merits of various research proposals. The process is transparent enough – criteria used, priorities, and decisions are a matter of public record. What we are seeing now, however, is a public increasingly used to full access to information and to participating in two-way conversation through social media. People do not just want to read articles – they want to be able to comment on them and engage with the authors and other readers. They don’t just want to listen in on scientific debate, they want to participate in that debate.
Dr. Roger Chafe and co-authors have recently written a paper discussing this phenomenon – the effect of social media on influencing research priorities. They use the example of the recent controversy over Dr. Zamboni and his liberation procedure for MS (I give an update on the literature on this procedure here). Tremendous public pressure has been brought to bear, especially in Canada, to conduct clinical trials of this procedure in patients with MS. Dr. Zamboni believes that MS is caused by blockages in the veins that drain blood from the brain, and opening up those veins would improve if not cure MS.
This has produced a dilemma for medical researchers. On the one hand, the liberation procedure is based upon highly preliminary evidence and represents a radical new idea that is not backed by basic science. Before a clinical trial would normally be undertaken, more research should be done to verify Dr. Zamboni’s basic claims. This is not just about the efficient use of clinical research resources, but also about research ethics. Before research is performed on humans we have an ethical obligation to make sure that it is more likely to be helpful than harmful, and that the treatment is plausible enough that it is worth the risk and effort of research. There is a certain due diligence that must be done.
However – the liberation procedure genie is now out of the bottle. The MS community is well-aware of Dr. Zamboni’s claims, and there are now anecdotal reports of improvement following the liberation procedure. Many patients with MS don’t want to wait for the due diligence of basic research, they want to take their chances with the procedure – especially those with progressive and treatment-resistant MS. Further, the procedure is becoming available in clinics around the world, so some patients are pursuing the treatment despite the lack of formal research, therefore clinical studies would help inform patients who are seeking the treatment anyway.
There is no easy answer to this dilemma. I feel that the normal process of medical research exists for many good reasons, and should be respected. It may seem cold and calculating – but that is exactly what we want, a rational and detached assessment of the science in order to maximize the use of resources and the benefits to the public. This is preferable to allowing “irrational exuberance” to rule the day.
At the same time, it is quite rational for patients with progressive MS to want to role the dice, even on a speculative new treatment, since the only other option is progressive decline. But the history of medicine has shown that the vast majority of time desperate patients looking for any chance at a treatment are extremely vulnerable, to charlatans, con-artists, and well-meaning but misguided cranks. Or simply to preliminary science that has yet to be verified. What, then, is the responsibility of the medical community to protect desperate patients from their own desperation?
The specific issue raised by Chafe and others is – who should control research priorities, scientists or the public? It seems that despite what anyone might think, the old days are gone forever. For good or bad, the public now has a front-row seat to the process and wants to participate. In the past public participation was indirect, through their elected representatives, who can set funding priorities, etc. But that is no longer enough.
The scientific and medical establishment has to recognize the current reality. They can fight against it, or they can embrace it. In a separate article Chafe argues that we should embrace it. I completely agree. Scientists and doctors should engage with the social media and with the public through these new venues. Scientists are used to having their own conversations, and this is still vitally important. But in addition they need to get involved with the public conversation – and not just by doling out tiny dribs and drabs of facts and opinions – they need to get their hands dirty and fully engage with the public.
Chafe argues that there need to be mechanisms by which the public can participate in the process of determining research priorities. This does not mean turning over decision-making to popular opinion. Rather, there needs to be transparent and meaningful involvement of representative of public communities, so that they have a real voice. But this voice will still be tempered by the expertise and perspective brought by professionals who have dedicated their lives to understanding the issues at hand. In other words, if we thoughtfully incorporate public participation in the process, we can avoid being bowled over by chaotic public clamoring when hot issues like the liberation procedure emerge (at least that’s the hope).
Increased public participation also means that the public needs to be better educated. There is the generic problem of rampant scientific illiteracy that needs to be addressed. But further this leads us back to the need for scientists and doctors to engage the public with social media and other means, to educate the public about how science and medicine work, and why we have come to the conclusions that we have. Facts are a good antidote to rumors and myth – not perfect, as it is still easy to beguile with compelling misinformation. But all the more reason why we need to make a huge effort to counteract the misinformation.
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