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| Collecting Demographic Data |
| Columns - On the Web | ||||||||
| Wednesday, 31 July 2002 | ||||||||
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The online community now represents a fairly diverse population. While initially, users tended to be white men from upper socioeconomic strata in urban settings, there are now more women than men. Ethnic groups other than Caucasians are becoming better represented, and lower socioeconomic groups are coming online as free access becomes available at libraries and other locations. The rural population is also coming online at an increasing pace. The sheer number of users continues to grow as well, with some online health sites reporting over one million hits per month. Many sites, as we discussed last time, deal with specific health issues. There are many dealing with cancer, addictive disease, and psychiatric illnesses such as depression. At least one study has indicated that those individuals visiting such specific sites are doing so to research their own affliction or that of an immediate family member. The addiction forum on America Online, while it was in operation, had over 300,000 regular participants during a five-year period. This begs the question: Where is the research?Each year, hundreds of studies are released in the field of addictive disease. Many begin with an abstract that starts, "We studied our clinic population of 1,500 patients over the course of the last three months," or ends with a discussion reading, "We recognize that our findings, dealing as they do with our study population of 50, may not be representative of the overall patient population." Breaking it down Most of the larger online areas have extensive data concerning their user population. They not only know the volume of users, but also have data regarding age, location, frequency of use, and duration of use. Some sites are able to record information regarding where the user was online immediately prior to entering the site, and some can record the destination to which a user goes after leaving the site. Survey techniques are available which permit easy methodologies for having users fill out instruments allowing for the collection of more personal data. The data can easily be filtered to remove the e-mail address of the participant if desired for increased anonymity and confidentiality - and yet there have been few studies making use of such information. Why do people go to addictive disease areas online? Why do they attend online AA meetings? Why do they post questions in these areas? Incredibly, we don't know the first thing about these individuals. It would be useful to publish the most basic demographic data, but it would be even more valuable to have some understanding about the reasoning behind the visit. Allow me to spend some time asking questions... The basics
Some of these questions require a basic analysis of available data. A few require a longitudinal study of a subgroup of participants. A few others require little more than the development and implementation of an appropriate study instrument. Is it cost-effective? A longstanding debate in this country has revolved around the cost of healthcare. It would be enlightening to find that patients who participate in online discussion groups can extend their sobriety, perhaps to the extent that they could decrease the frequency with which they seek one-to-one attention with a counselor. While I am a firm believer in the importance of the patient-clinician relationship to longstanding patient sobriety, there are far more patients suffering from addictive illness than there are clinicians to help them. The availability of an inexpensive step-down, if you will, if shown to be efficacious, would be a remarkable addition to the clinical armamentarium. Naturally, studies might indicate that there is little to be gained from participation in these online forums. Or they might indicate that because such online users tend to eschew live interaction, they tend to relapse at an increased rate. Here again, it would be useful to study the data in order to pass along real study results to the online population. Our populace tends to grab the latest thing as a way to better health - whether we're talking about bran muffins, SAM-E, St. John's Wort, or two glasses of wine each day - better research is the key to letting us help our patient population. The concept of evidence-based medical care is that of providing only care that has been indicated by the research as being appropriate, safe, and effective. In the field of addictive illness, much of the treatment is that of self-help and group help. Since patients are turning to the online medium in increasing numbers, it is critical that we have an understanding of the value of such participation. Since the online population is now beginning to be representative of the entire American population, any studies with online participants have the capability of being not only an indicator of the value of online participation, but of presenting valuable insights into the entire population of those suffering from addictive illness. For the researchers in the audience, I hope my questions might be viewed as an incentive. Wouldn't we all like to know the answers? Stuart Gitlow, MD, MPH is the author of Substance Use Disorders: A Practical Guide, from Lippincott Williams & Wilkins. He is Vice-Chair of the American Medical Association's eMedicine Advisory Committee. He writes and speaks frequently on both topics.
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