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Health Informatics Journal
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Can the Internet Be Used to Collect Clinical Data for Research?

Y. W. Chow

T. Treasure

Guy’s and St Thomas’s Hospitals, London, UK

S. Gallivan

Clinical Operational Research Unit, University College London, UK

The study aimed to evaluate the effectiveness of using the Internet to collect clinical data by collecting echocardiographic data from people with Marfan Syndrome via an online survey. Measures included the information accuracy of the respondents, and the response rate and response time of the respondents’ doctors. Of 286 responses received over two years, 62 responses generated usable information. The Internet proved to be a valuable tool for researchers to identify individuals with a relatively rare condition. However, it is neither a straightforward nor a speedy means of gathering data. The considerable checking required correspondence with patients’ doctors, and this process proved to be both time-consuming and relatively unproductive. The Internet has yet to be established as an effective method for collecting clinical data.

Key Words: decision making • echocardiographic data • Internet • Marfan Syndrome • online survey

Health Informatics Journal, Vol. 10, No. 1, 77-82 (2004)
DOI: 10.1177/1460458204040671
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