Internet Mediated Research

There are three reasons the time is right to make use of Internet Mediated Research to increase our knowledge about Autism Spectrum Disorders.

1. Internet Mediated Research (IMR) is maturing as a field.

Internet Mediated Research, a collection of methodologies for scientific inquiry using the Internet, is maturing as a field. We now have many well founded principles to help guide our use of the Internet for a project like IAN Research. A quick search through PubMed will reveal many articles on studies that used Internet surveys, email surveys, or other Internet mediated tools to conduct their research. A more careful review of recent publications will reveal a growing informatics literature base detailing proven strategies for IMR.

2. Use of the Internet has grown among adults in the USA from less than 20% in 1995 to more than 70% today.

88% of young adults (18-29 years) and 84% of “middle-aged” adults (30-49 years) now use the Internet. ¹  These age ranges include those individuals most likely to have children. This is particularly relevant to IAN Research as our current target population is parents of children under the age of 18 with an ASD.

Internet adoption continues to increase. ²   IMR was once subject to significant and demonstrable bias in regards to subject recruitment, participant demographics, and socioeconomic status. Now it is increasingly thought of as a means to diminish barriers and bias in research participation. ³

3. Families --a key source of data in autism research-- can most easily be reached via the Internet.

As previously noted, families are a vital source of data on the behavior and way of being of an individual with an ASD. Based upon the parent feedback we have received to date, they are also highly motivated to take part in autism research –one of the only definite actions they can take on behalf of their affected child besides fundraising or advocacy. The Internet removes most of the barriers to their participation.

Given the importance of data from families, the ubiquitous use of the Internet, and the rapidly increasing maturity of Internet Mediated Research, it is clear that it is time for us to be deliberate about the use of IMR in autism-focused research. In fact, some of you have already used the Internet in some very creative ways to further our understanding of ASDs. It seems inevitable to me that it will have an increasing role to play in all sorts of clinical research projects, from clinical trials to observation studies.

References

1. Madden, M. (2006). PEW Internet and American Life Project: Internet penetration and impact. Available at PEW Website  --retrieved January 3, 2007.
2. Ibid.
3. Hewson, C., Yule, P., Laurent, D. & Vogel, C. (2003). Internet research methods: A practical guide for the social and behavioral sciences. London, Thousand Oaks, New Delhi: SAGE Publications. (pg. 31)