Informed Patient: Internet Use for Medical Data Shifts Doctor-Patient Roles By Laura Landro When Amy Wallens Green began feeling extreme sensitivity to noise in her ear, her doctors could find nothing wrong on examination, and no solutions to help ease the problem, which kept her up nights. It was only after coming across an online community of fellow sufferers that she learned about tinnitus, a condition that produces an uncomfortable roaring, buzzing, hissing, or ringing in the ears or inside the head. Ms. Green is one of a growing number of Americans who find information about a medical condition online, often before their own doctors diagnose them. It's a situation that is empowering patients, and sometimes strains the doctor-patient relationship. Indeed, one message that comes across clearly from Web-savvy patients: Don't be intimidated, even if you encounter resistance or hostility from physicians who caution you to avoid online information. According to a survey released by the Pew Charitable Trust's Internet and American Life Project, 80% of adult Internet users have searched for at least one of 16 major health topics online, compared with 62% who said they had looked for health and medical information online just three years ago. Among those "health seekers," fully 58% say they will first go online when they next need reliable health information, compared with 35% who say their first move would be to contact a medical professional. For the Pew survey, Princeton Survey Research Associates conducted phone interviews with 2,038 adults, and conducted a separate online survey with multiple-choice questions that drew more than 2,000 responses. A separate study released this week by Solucient LLC, an Evanston, Ill., health-care information firm, found that 45% of adults turn to the Internet for numerous health-related purposes, including research, medication purchases, or details on hospitals and health plans. That survey of 25,000 adults found that only 16% of them refer to their doctors for health information. Clearly, consumers have good reason to take advantage of the Web as a health resource, especially now that they face higher out-of-pocket payments for care. Pew survey respondents said the Internet makes them feel more independent of their doctors, empowers them to ask more informed questions during appointments, and reduces fear of the unknown. While 73% of the respondents in the Pew survey said the Web has improved the health information and services they receive, it has also led to different -- and not always better -- relationships with their doctors. "Patients are making use of these high-quality resources on the Internet that the pros don't understand," says Tom Ferguson, the physician and online health expert who helped Pew to design the survey, recruit respondents and interpret the data. He says online support groups and communities are among the most powerful force reshaping health care today. In many cases, he says, patients in communication with others on support groups "are avoiding medical mistakes, realizing they are getting bad advice, and going to other doctors." By going online to gather testimony from fellow support group patients, one patient in the survey suggests, you may be able to persuade a doubtful doctor that you aren't the only one with the odd symptoms you are having. Dr. Ferguson advises patients to seek out support communities through search engines and groups like the Association of Cancer Online Resources (www.acor.org). But he says more research needs to be done on their role: "There are these complex communications networks focusing on health that we know very little about, and they need to be studied more." Virginia Hetrick, a cancer survivor involved in an online community for inflammatory breast cancer, a rare form of the disease, says online support groups offer the most promise for patients with uncommon diseases or hard-to-diagnose symptoms. "Very frequently, for patients and caregivers, the Internet will have the broadest approach to issues arising from rare and orphaned diseases," says Ms. Hetrick, who teaches information technology topics at universities in Southern California. "The combined wisdom of these patients and caregivers is frequently deeper than a single medical professional can possibly develop in the time available," unless his or her entire career has been devoted to the disease. Of course, many physicians may fear, rightly, that patients will rely on each other to self-diagnose in cases where medical expertise is important. Check medical advice with your doctor. And not everyone is comfortable with support groups. Some Pew survey respondents were wary of quacks and misinformation on discussion forums, and don't want to disclose their personal medical issues with strangers. "Sharing personal medical and health information across the Internet requires a certain leap of faith, or at least a strong sense of privacy and trust," write Susannah Fox and Deborah Fallows, the researchers who prepared the survey report for Pew. Generally patients who tap into the Internet are enthusiastic about the benefits. Ms. Wallens Green, an associate director of licensing and business affairs at PBS Consumer Products, says that online tinnitus groups gave advice on how to reduce the reverberations in her ear and the best earplugs to help her get some sleep. She agrees that consumers "shouldn't self-diagnose through the Internet," and should use online searches to "enhance" their communication with doctors. Still, she adds, "it's comforting to know that in the blink of an eye and with a little filtering, I can locate a community online who will provide me with resources and support." The Doctor is In(ternet) Percentage of Internet users who say they have searched online for information on the following health topics: Specific disease/medical problem ................. 63% Certain medical treatment/procedure .............. 47 Diet, nutrition, vitamins, etc. .................. 44 Exercise/fitness ................................. 36 Prescription/over-the-counter drugs .............. 34 Alternative treatments/medicines ................. 28 Health insurance ................................. 25 Depression, anxiety or mental health issues ...... 21 Particular doctor/hospital ....................... 21 Experimental treatments/medicines ................ 18 Source: Pew Internet and American Life Project survey 17 July 2003 The Wall Street Journal British J Cancer, 10/04 Remember we are NOT Doctors and have NO medical training. This site is like an Encylopedia - there are many pages, many links on many topics. 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