Citizen Involvement in Stuttering Research?

With the dashing of hopes that pagoclone might eventually be released to the market, the slow pace of medical research for palliatives/cures for stuttering, and the reluctance of researchers and pharmaceutical companies to release data, we propose an alternative path.  This path is suggested by an article in the Wall Street Journal (December 3, 2011) entitled “Citizen Scientists.” 

As the article headline claims, “ordinary people are taking control of their health data, making their DNA public and running their own experiments”.  An organization called Genetic Alliance is part of a growing movement that empowers patients to control and analyze their health data in order to advance medical knowledge.  The on-line posting of personal medical information and its public availability is the key to such initiatives.

The citizen scientists involved in these efforts may use the internet to run experiments and clinical trials as well as perform their own analyses.  The experiments generally test drugs, approaches or devices that are already available as opposed to some new, for example, drug.  And the results of some of these experiments are being published by medical journals.

An on-line site dedicated to patient-driven research concerning the efficacy of treatments for a variety of health conditions (close to 600 at this date) is Curetogether.com.  This website collects data from individuals through survey instruments regarding their symptoms, treatments, side-effects, and causes. 

The results are tabulated and presented in graphical form.  Participating individuals may add further observations through a  “Post Your Comment” discussion section.  In addition, the data are presented in cross-tabulation form with effectiveness along the y- axis and popularity (extent of use) along the x-axis.

The Curetogether organization encourages partnerships with research organizations, universities, and self-experimenters.   It collaborates on and sponsors a number of research studies using the collected data.

Unfortunately, among the health conditions covered, stuttering is not included.  Clearly, its inclusion would be of benefit to those individuals who are disfluent in terms of identifying treatments that may be of use as well as avoiding those that are ineffective and perhaps costly.  The data might also provide insights that could improve the understanding of stuttering and lead to future advances.

Critics may claim that data gathered through citizen involvement might not be collected in a rigorous fashion, that conclusions may be drawn from sample sizes too small to yield statistically valid results, or that self-selectivity biases may undermine the conclusions.  While in some cases this may be true, the data collected and the resulting studies nevertheless are useful in pointing the way to future research efforts either by citizen scientists or professionals.