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Public Engagement in Research: The good, the bad and the ugly...

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Cancer Research 101: Public Engagement in Research: The good, the bad and the ugly...

Saturday, March 3, 2012

Public Engagement in Research: The good, the bad and the ugly...

I have provided two links below to two blog posts that you should read.

One of them makes a valid point, one in which I concur totally, that science and research, especially biomedical research, that has somehow "divorced" itself from the very public and patients it seeks to serve, is folly. In my view, not only must the public be "informed" of the results of scientific endeavour on their behalf, but they should be meaningfully involved in its conduct and in productive (but objective, informed and knowledgeable) ways to help steer its agenda. After all, it is almost always public money being spent on research - whether that money is in the form of involuntary taxes or voluntary contributions to your favourite health charities.

In one of these posts, Misha Angrist from Duke University argues very cogently that if we do not find better paths of "inclusion" we will all be worse off in the conduct of research.

But in this day and age of blogs, and Facebook and Twitter and all other forms of all things Internet and the immediacy of social media, the public actually has more power than we might realize. But do we wield this in the best interests of science and research?

The other post, from Steven Novella of Yale University details how politics has overtaken science in the popularization of the so-called "liberation therapy" for multiple sclerosis. I know that in Canada, the MS Society, a very reputable and first rate health charity (in my opinion), has been besieged and criticized for its "we need more evidence" stance on the issue, but the "forcing" of them and of provincial and federal governments to fund research on this therapy (whether warranted by the evidence or not) has been a clear demonstration of the power, for good or ill, of social media and the Internet in bringing unrelenting public pressure to bear.

I recognize that it is nigh on impossible for an MS patient, or a cancer patient, to be asked to sit back and to suggest that they wait for the real evidence to come in, when faced with the tantalizing prospect of some new treatment modality that MIGHT help them right now. How could a patient or his/her family and caregivers exhibit that kind of objective restraint?  That is why I said above that the public needs to help to steer the research agenda, but only when they are objective, informed and knowledgeable. We have to take our responsibilities seriously and become better informed if we want to productively contribute to much needed public debates on issues such as these.

In the end, if Ministers of Health, public policy makers and heads of research granting agencies do not base their decisions on sound evidence, then research will become increasingly prone to politicization and be overrun by emotion as opposed to logic, evidence and facts.

I hope I am never in the position of having to walk that slippery tightrope between wishing and hoping for something because a loved one is in desperate straits, vs. the scientist in me that says that if we abandon evidence in making public policy, health and medical decisions, then we may as well close up the research shop for good....

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