Research by Cima et al3 focused on patients in an IBD clinic and is one of the few studies that has evaluated Internet use in a specific subspecialty setting. The investigators reported that 59% of patients obtain IBD-specific information from their gastroenterologist, 54% obtain IBD information from the Internet (most commonly institution- or organization-specific sites), and 54% obtain IBD information from their primary care physicians. These results were confirmed by Borum and Shafa,6 who reported in a letter to the editor of Inflammatory Bowel Diseases that 56% of women with IBD attending an educational seminar identified the Internet as a primary source of medical information about IBD, while half of the women surveyed identified the Internet as their only source.
Competing demands on physicians' time and the trend toward division of care among subspecialists make it likely that patients will continue to look elsewhere for medical information.3 The Internet is a logical alternative, since it essentially allows a patient to obtain a second (or third, or fourth) opinion at any time of day or night, with complete anonymity, and at little or no cost.7
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The plethora of medical information available on the Internet is of varying quality. Several studies have reviewed this issue and suggest that there is reason for concern. For example, a systematic evaluation of the top 34 Web sites resulting from a Google search using the terms "Crohn's disease" and "ulcerative colitis" found that only 5 scored 75 points or better (maximum score = 107) using a Web Site Quality Evaluation Instrument (QEI) that was developed to assess a number of IBD-related knowledge domains.8 The investigators also assessed each Web site using a Global Quality Score (GQS), which considered a site's flow and ease of use in addition to its overall quality, and found that only 5 scored a 4 or 5 on a 5-point scale, with a direct relationship (r = 0.81) between the QEI and GQS. Perhaps unsurprisingly, there was seemingly no relationship between a Web site's score and its position in the list generated from the Google search. Only 2 of the 10 highest scoring Web sites appeared within the first 10 Web sites listed by the Google search, which the authors note is of particular concern because most Internet users browse only the first 10 sites resulting from a search.
A similar study used DISCERN, a validated tool to evaluate Web site content quality, to assess the quality of Web-based information about IBD.9,10 Investigators entered "inflammatory bowel disease," "Crohn's disease," and "ulcerative colitis" as separate search terms into 6 popular search engines and used DISCERN to evaluate the first 30 results from each search after eliminating duplicates, sites that failed to download, and sites that did not contain sufficient or appropriate information to permit evaluation. Of the 76 Web sites evaluated, 43% were rated as excellent to good, and 57% were rated as fair to poor, with institutional, pharmaceutical, and nonpharmaceutical commercial sites scoring significantly higher than alternative medicine sites (P>0.05). Again, there was no relationship between a Web site's DISCERN score and its position in the lists generated by the search engines.
Taken together, these 2 studies raise concern about the quality of IBD information on the Internet. As 1 study notes, information that is inaccurate, biased, not evidence-based, and/or incomprehensible can have a negative impact on a patient's role in the decision-making process.8 This issue is compounded by the fact that several studies report that the majority of patients believe that information on the Web is trustworthy. For example, Cima et al3 report that 57% of patients in an IBD specialty clinic rated online information as "trustworthy to very trustworthy"; O'Connor and Johnson11 report that only 14% of patients in a gastroenterology outpatient clinic were uncertain about the quality of the Web sites they visited; and Diaz et al12 reported that 60% of patients in a primary care internal medicine private practice who use the Internet to search for health information believed that it was the "same as" or "better than" information they obtained from their physician. In contrast, according to a study by Murray et al,13 only 28% of respondents to a nationally representative telephone survey were comfortable with their ability to evaluate online health information.
Accurate medical information does exist on the Internet, but it is difficult to predict which sites provide high quality information. A nonprofit profile is not necessarily indicative of better quality information, nor is a higher ranking by a search engine, as most currently rank information sources according to undisclosed criteria that do not include an independent assessment of information quality.10
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On one hand, online medical information can help patients become better educated about preventive medicine or a chronic illness, more comfortable in their interactions with their healthcare providers, and more compliant with treatment. But on the other hand, if patients turn to the Internet for self-diagnosis and treatment without the skills to assess the accuracy of the information they find, they may request inappropriate care and have a negative impact on their healthcare providers' time.5 According to at least 1 study, physicians may acquiesce to such requests, either because they fear damaging the patient-physician relationship or to avoid the increased time required to convince the patient that an alternative approach is likely to be more effective.5 However, the same study also determined that patients appear to trust their physician to help them interpret the information they find online and accept their physician's analysis of whether or not an intervention is appropriate.
In general, patients appear to believe that that the health information they find online has more of a positive than negative impact on their relationship with their physician, unless they feel rushed during an appointment or if their physician acts as if his or her authority is being challenged.13 Likewise, according to the cross-sectional survey of physicians mentioned above, a doctor's belief that a patient was challenging his or her authority was the most consistent predictor of a perceived deterioration in the physician-patient relationship.5 The same survey also indicated that physicians were receptive to patients bringing accurate, relevant online information to their appointments and felt that it improved health outcomes, whereas they perceived patients bringing inaccurate or irrelevant information as having a negative impact on quality of care, health outcomes, time efficiency, and the physician-patient relationship.
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While it is likely that patients are looking for health information online, healthcare providers probably will not know unless they ask, as only about one-third are forthcoming about the information they have found.4 Showing respect for a patient's efforts to become partners in their own care can reduce fear and build trust. For example, when taking a patient's medical history, it may be helpful to routinely inquire about whether they use the Internet to obtain health-related information.12 Once patients feel comfortable talking about what they have found online, you can use it as an opportunity to discuss the fact that the Internet is largely unregulated and that information posted may not be accurate. This sort of dialog can be critical, since the majority of patients do not consistently consider the quality of the information they find online or check its source and date.4
It is also critical to consider what happens following an appointment, which is when patients tend to turn to the Internet to confirm a diagnosis, learn more about their medical condition, or find an online support group. Awareness of patients' sources of medical information is important in the development of treatment plans, especially for patients with chronic disease, since it offers an opportunity to foster the use of credible sites by providing patients with a list of trusted resources.6
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The Internet has the potential to transform access to health-related information and improve patient participation in their healthcare. Research also suggests that patients who have information related to their disease are less anxious, more compliant, and more satisfied with their treatment.3 However, before its full potential can be realized, consumers must learn to improve their ability to find relevant information online and assess its accuracy. Concurrently, healthcare providers must develop the communication skills necessary to facilitate discussion about the information that their patients are finding online.5
If you found this article interesting, you may also be interested in previous issues of The GI Digest newsletter:
Volume 1: Importance of Split Dosing Bowel Preparation for Colonoscopy
Volume 2: Opioid-Induced Constipation in Patients With Advanced Illness Receiving Palliative Care: A Common Complication of Pain Management With Opioids
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| About the authors |
 |  Keren Price, MS, RD Keren Price is a medical writer with expertise in the areas of inflammatory bowel disease, gastroparesis, nutrition, chronic pain, Parkinson's disease, and epilepsy. |
 | William Sandborn, MD Dr. Sandborn is the Division Chief for Gastroenterology in the University of California, San Diego, Department of Medicine. He has published more than 380 peer-reviewed papers in publications including the New England Journal of Medicine, The Lancet, the Journal of the American Medical Association, and Gastroenterology. Dr. Sandborn's research interests include clinical trials and clinical pharmacology related to inflammatory bowel disease. He is a key thought leader in the treatment of IBD and has a large clinical practice of patients with these challenging illnesses. Dr. Sandborn was the former Vice Chair of the Division of Gastroenterology and Hepatology at the Mayo Clinic. He received his medical degree from Loma Linda University, where he also completed an internal medicine residency. He then completed a Gastroenterology fellowship at the Mayo Clinic. |
| About the authors |
|  Keren Price, MS, RD Keren Price is a medical writer with expertise in the areas of inflammatory bowel disease, gastroparesis, nutrition, chronic pain, Parkinson's disease, and epilepsy. |
| William Sandborn, MD Dr. Sandborn is the Division Chief for Gastroenterology in the University of California, San Diego, Department of Medicine. He has published more than 380 peer-reviewed papers in publications including the New England Journal of Medicine, The Lancet, the Journal of the American Medical Association, and Gastroenterology. Dr. Sandborn's research interests include clinical trials and clinical pharmacology related to inflammatory bowel disease. He is a key thought leader in the treatment of IBD and has a large clinical practice of patients with these challenging illnesses. Dr. Sandborn was the former Vice Chair of the Division of Gastroenterology and Hepatology at the Mayo Clinic. He received his medical degree from Loma Linda University, where he also completed an internal medicine residency. He then completed a Gastroenterology fellowship at the Mayo Clinic. |
| About the authors |
|  Keren Price, MS, RD Keren Price is a medical writer with expertise in the areas of inflammatory bowel disease, gastroparesis, nutrition, chronic pain, Parkinson's disease, and epilepsy. |
| William Sandborn, MD Dr. Sandborn is the Division Chief for Gastroenterology in the University of California, San Diego, Department of Medicine. He has published more than 380 peer-reviewed papers in publications including the New England Journal of Medicine, The Lancet, the Journal of the American Medical Association, and Gastroenterology. Dr. Sandborn's research interests include clinical trials and clinical pharmacology related to inflammatory bowel disease. He is a key thought leader in the treatment of IBD and has a large clinical practice of patients with these challenging illnesses. Dr. Sandborn was the former Vice Chair of the Division of Gastroenterology and Hepatology at the Mayo Clinic. He received his medical degree from Loma Linda University, where he also completed an internal medicine residency. He then completed a Gastroenterology fellowship at the Mayo Clinic. |
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1. Podolsky DK. Patients, gastroenterologists, and the World Wide Web. Gastroenterology. 1998;114:5. 2. Pew Internet and American Life Project. 80% of internet users look for health information online. http://www.pewinternet.org/~/media//Files/Reports/2011/PIP_HealthTopics.pdf. Published February 1, 2011. Accessed August 14, 2011. 3. Cima RR, Anderson KJ, Larson DW, et al. Internet use by patients in an inflammatory bowel disease specialty clinic. Inflamm Bowel Dis. 2007;13:1266-1270. 4. Pew Internet and American Life Project. Online health search 2006. http://www.pewinternet.org/~/media/Files/Reports/2006/PIP_Online_Health_2006.pdf.pdf. Published October 29, 2006. Accessed August 19, 2011. 5. Murray E, Lo B, Pollack L, et al. The impact of health information on the Internet on health care and the physician-patient relationship: national U.S. survey among 1.050 U.S. physicians. J Med Internet Res. 2003;5:e17. 6. Borum ML, Shafa S. Women with inflammatory bowel disease may infrequently rely on their physicians as a source of disease-specific information. Inflamm Bowel Dis. 2009;15:1773. 7. Angelucci E, Orlando A, Ardizzone S, et al. Internet use among inflammatory bowel disease patients: an Italian multicenter survey. Eur J Gastroenterol Hepatol. 2009;21:1036-1041. 8. Bernard A, Langille M, Hughes S, Rose C, Leddin D, Veldhuyzen van Zanten S. A systematic review of patient inflammatory bowel disease information resources on the World Wide Web. Am J Gastroenterol. 2007;102:2070-2077. 9. Charnock D, Shepperd S, Needham G, Gann R. DISCERN: an instrument for judging the quality of written consumer health information on treatment choices. J Epidemiol Community Health. 1999;53:105-111. 10. van der Marel S, Duijvestein M, Hardwick JC, et al. Quality of web-based information on inflammatory bowel diseases. Inflamm Bowel Dis. 2009;15:1891-1896. 11. O'Connor JB, Johanson JF. Use of the Web for medical information by a gastroenterology clinic population. JAMA. 2000;284:1962-1964. 12. Diaz JA, Griffith RA, Ng JJ, Reinert SE, Friedmann PD, Moulton AW. Patients' use of the Internet for medical information. J Gen Intern Med. 2002;17:180-185. 13. Murray E, Lo B, Pollack L, et al. The impact of health information on the internet on the physician-patient relationship: patient perceptions. Arch Intern Med. 2003;163:1727-1734.