Sunday, May 20, 2007

Is the Internet Creating a New Form of Research Science?

I'm not ashamed to admit that I am impatient with the progress of research science, especially as it pertains to autism. Ever since I was drafted into this autism advocate army in 2004, and because of the way my daughter regressed into autism, I have thought there was something more to this disorder than just a natural genetic switch that got turned on at 16 months. This resulted in us making, at first, a near frenetic search for a cure. Today it has become a more measured and calculated trial of various biomedical therapies. In either case, our cohort, our confidant, our conscience and our co-conspirator has been the internet.

The instant sharing of information from the far corners of the world, a concept and only a promise less than 10 years ago, is now so commonplace it is taken for granted. Even language barriers are slowly being broken down with translation software. Before 2004 (BA...Before Autism), I was enamoured with the internet's potential; but I never would have thought about it in terms of tracking medical conditions or disorders. So now we can have so many eyes looking at so much medical data and information, it would seem to me the scientific equivalent of the NASDAQ of research potential. But, to me, we are only scratching the surface potential of the internet's use in research science.

Never has there been such an instantaneous sharing of information so close to the test subjects themselves. Before, the ability to research; the availability of information; and the sharing of information was the almost exclusive domain of scientists and researchers. The explosion of users and speed of the internet and the availability of information has transmuted this inequity over to the people most affected and highly motivated to find out about the disorder or disease that affects their lives. There are probably other disorders, but I feel that autism is at the knife's edge of this change, the reasons are clear in my mind. First, a near 100 fold increase of those classified on the spectrum in the last generation. Next, a near criminal lack of knowledge of most medical professionals to many aspects of the disorder. Lastly the recent ability to diagnose at a very early age; putting the onus on a highly motivated and highly internet savvy group---parents of young children.

Like it or not, there are literally dozens of boards now supporting all types of autism biomedical therapies. Parents, like my former self, flock to these sites soon after their diagnosis, largely because there is very little support coming from the 'traditional' medical community; you are basically given a pamphlet and a prayer from your doctor after diagnosis. Parents then jump on the internet and given false hopes of quick universal causes and cures; both expensive and unproven. But these boards are the layman's version of a research project. I would think that if a board is either not getting the point across or just flat out not working, the 'research project' would die. It does leave wide open the potential for those who have good PR but bad premises to push through an idea that has no real merit; a placebo-induced psychosis where anything would work. There are still many problems with misinformation; still too much scuttlebutt, opinion, out and out lies. Money is going to be made off of this disorder, much of it based on incomplete, inaccurate or unsubstantiated information. But at the core of these boards are people all in the same situation; looking for information, testing results, sharing information and motivated more than ANY research scientist ever would be.

But I think some underestimate the power and the depth of this new movement toward putting the responsibility of research on the people. They see it as an invasion of the rabble of ignorant people into the domain of statisticians, scientists and researchers. While they do have a very valid argument from a medical standpoint, there is also the counterargument that the realm of behavioral research has always had the distinct disadvantage of being unnatural from the word go. Putting a child in a strange situation, with standardized questions and stagnant expected responses cannot be completely reliable either. Still, many argue the need for statistical backing of causation and results on a disorder that has a notoriously subjective view of results and a wildly varying disorder base in the past 20 years. How can causation and results be defined if the disorder ITSELF is still being defined? But I digress. Parents can provide the missing link in these researchers' puzzle and allow them to get into a world they cannot create in a lab or office.

I think that researchers can and will tap into this resource of willing and able subjects to transform the gathering of data and use of it to previously unheard of levels. Sites like the IAN Network , are trying to do just this and may be at the forefront of this potential revolution. It's only going to be a minor stretch for both the researchers to relax their need for control a little, and a stretch for the parents to be more vigilant in their documentation and process, and we will have a potentially mind boggling new way of tracking disorders and trying out various therapies.

In the end, you really don’t have research science going on more than you have the near perfect availability of anecdotal information. Fodder for the research scientist to chew on and figure out what to look at next. Despite the placebo factors; the mass hypnosis potentials; the money to be made; and the virtual indistiguishablity of fact vs opinion; the internet has the potential to transform research science into a truly global entity from both a geographic and participatory perspective. Let's hope, for my daughters' sakes, that it will move as fast as I think it will...

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