Use of the Internet by patients with chronic illness

Objective: To understand how patients with chronic illness use the Internet to manage their health. Design and Participants: An online survey was conducted among 10 069 patients with chronic illnesses. Survey results were obtained from patients with 35 separate chronic conditions, with at least 50 respondents for each condition. The survey was administered online at a dedicated, password-protected web site. Data were analyzed to identify how online behavior varied by disease state and other demographic variables, as well as to determine what kinds of information were preferred or viewed as most credible. Results were also weighted to correct bias introduced by nonresponse from under-represented groups. Results: The most frequently represented conditions were allergies (n = 4749), arthritis (n = 2841) and hypertension (n = 2561). Respondents complaining of a gynecological condition, chronic sinusitis, arthritis, migraine. or a thyroid condition reported spending the most time online. Patients who spent the most time seeking health information online also described themselves as being in poorer health than other respondents. Those who were more skeptical about healthcare, were dissatisfied or experienced problems with access to healthcare, reported being more likely to go to the Internet as a source of health information. The Internet appears to be used as a surrogate for medical advice among patients who lack insurance coverage or otherwise find it difficult to obtain care. Individuals with a gynecological condition, depression, diabetes mellitus, or a gastrointestinal disorder were more likely to use online news groups, bulletin boards, or lists that are designed specifically for health topics. Direct online communication with clinicians was very rare, as was online fulfillment of medication prescriptions. Women, in general, spent more time looking for health-related information than men did. Major Internet portals with health-specific content were viewed as the most desirable sources of information, followed by medical or academic web sites. Web sites sponsored by health insurance plans were the least favored sources of information. Overall, 42% of respondents felt that the Internet has had a major impact on understanding their health problems. Conclusions: These results further detail the emergence of an activist health consumer who uses the Internet to help manage their health. This type of individual is likely to be in poorer health, female, more inclined to engage in self-care, and may lack access to professional care. As Internet usage becomes increasingly widespread, this group may become increasingly relevant. Future research will document the impact of these changes with successive samples of at least 10 000 participants.