Embracing the Internet for Progress in Shared Decision-Making I t should be no surprise that inflammatory bowel disease (IBD) patients are using the internet to gather information about their disease and its treatment. In this issue of the Journal, Cima et al 1 report that 69% of IBD patients use the internet as a way to gather information about their disease, second only to their gastroenterologists as a source of disease-specific information. The majority of the patients surveyed felt that the internet improved understanding of their diagnosis and treatment options, and on a scale from 0 -10, with 10 being "very trustworthy," patients scored IBD-specific information from the internet as a 6.8. The most commonly visited sites were of academic centers and noncommercial organization websites, such as the Crohn's and Colitis Foundation of America (CCFA). Another interesting finding was that two-thirds of patients would prefer to communicate with their physician via e-mail, a nearly identical number as seen in a Harris Interactive survey and recently published in the New England Journal of Medicine. 2 Although there are some limitations to these data, most notably a question on generalizability, as the Mayo Clinic does not see a typical patient population, it is clear that the internet will play an important role in how IBD patients (irrespective of their age) obtain disease-related information.
It is not clear if this is good or bad news. Although a patients' physician is the most appropriate source for individualized information about their disease, time is a significant limiting factor and alternative sources of trusted information are welcome. With that said, although patients in this survey most often visited academic and noncommercial websites, there are a lot of nonevidence-based and potentially biased data widely available with a simple internet search. A Google search for IBD-related information yields a broad range of links including those to the CCFA website, the Mayo Clinic, academic journals, pharma sites, chat rooms, blogs, and law offices. A majority of the data available aims to give basic background information on IBD, a review of available treatments, and generic recommendations on the approach to management. Although some of these sites are wonderful resources, it may be difficult for patients to determine which information is accurate, and when it actually applies to them. Furthermore, "horror stories" of the worst cases are overrepresented, which may scare patients and give them a false view of the natural history of disease or treatment side effects. Now that we have confirmation that IBD patients are using the internet to obtain disease-specific information, it is time to embrace this, and use it as an opportunity to make progress in how we communicate with our patients and involve them in health care decisions.