Widespread skepticism among medical providers has not deterred the remarkable growth in the number of people seeking medical information online. More Americans research health information online on an average day than visit health professionals. About 6 million Americans go online for medical advice on a typical day, whereas the American Medical Association estimates that there are an average of 2.75 million ambulatory care visits to hospital outpatient and emergency departments per day and an average of 2.27 million physician office visits per day.\u00a0 So we set out to examine how Internet users search for information, how they establish its credibility, and how they decide to act on it. We used several approaches. We surveyed 500 Internet users who go online for health care information. This special sample, surveyed June 19-August 6, 2001, portrays the overall habits and attitudes of those Americans who use the Internet for medical information and advice.\u00a0 We also gained insights from two online focus groups conducted on October 15, 2001, by Harris Interactive.\u00a0 In one group, six participants with special needs discussed how they use the Internet to manage their chronic illnesses and care for their loved ones.\u00a0 In the second group, ten participants representing the general population discussed how they use the Internet to take better care of themselves and their loved ones.<\/p>\n\n
Part One: A basic profile of health seekers<\/h3>\n\n
Who is searching for health information online?<\/strong> <\/p>\n\n In a national survey conducted March 1-31, 2002, the Pew Internet Project found that 62% of Internet users, or 73 million people in the United States, have gone online in search of health information. Women are more likely than men to have researched a medical question online. Some 72% of online women have sought medical information online, compared with 51% of online men.\u00a0 Those in the middle age groups are more likely to turn to the Internet for health information than those under 30 or over 65.\u00a0 College-educated Internet users are more likely to search for medical advice online than those with a high school education.\u00a0 Longtime users are more likely than Internet newcomers to look online for health tips.\u00a0 Interest in health information cuts across ethnic and racial groups in a relatively equal way \u2013 white, black, and Hispanic Internet users are equally enthusiastic for such material. <\/p>\n\n Fifty-seven percent of health seekers describe themselves as in \u201cgood\u201d health.\u00a0 Twenty-nine percent of health seekers say they are in \u201cexcellent\u201d health and 14% say they are in \u201cfair\u201d or \u201cpoor\u201d health.\u00a0 By comparison, the National Center for Health Statistics reports that 37% of Americans assess their health as \u201cexcellent,\u201d 31% say it is \u201cvery good,\u201d 23% say it is \u201cgood,\u201d and 9% say their health is \u201cfair\u201d or \u201cpoor.\u201d[4.numoffset=”4″ National Center for Health Statistics\u2019 \u201cNational Health Interview Survey.\u201d Available at: http:\/\/www.cdc.gov\/nchs\/about\/major\/nhis\/released200202.htm<\/a>]\u00a0 Not surprisingly, those in fair or poor health search for medical advice more frequently and on more topics than those in better health.<\/p>\n\n On a typical day, 5% of all Internet users \u2013 about 6 million Americans \u2013 go online to look for health information.\u00a0 There are few differences in the population of Internet users who searched online \u201cyesterday\u201d; men, women, old, young \u2013 all were equally likely to look for medical advice. However, it seems that those with more online savvy may be more accustomed to answering a health question online \u2013 7% of Internet users with three or more years of experience search on a typical day, compared with 2% of Internet users with just six months of experience online.<\/p>\n\n Weight control and prescription drug information are high on the list of health interests<\/strong> <\/p>\n\n Almost every health seeker (93%) has looked at one time or another for information about a particular illness or condition. Roughly two thirds of all health seekers have looked for information about nutrition, exercise, or weight control.\u00a0 In our August 2000 survey, 13% of health seekers said they had sought information about just \u201cfitness and nutrition.\u201d The new survey shows a big increase when weight control is added to this list.\u00a0 Those who describe their health as \u201cfair or poor\u201d are more likely than those in excellent health to have looked for information about nutrition, exercise, or weight control.<\/p>\n\n Two thirds of all health seekers (64%) have looked for information about prescription drugs.\u00a0 Those who have seen a doctor in the past year are more likely to use the Internet to research a certain drug than those who have not consulted with a doctor.\u00a0 In our August 2000 survey, only 10% of health seekers said they had purchased medicine or vitamins online.\u00a0 As with other aspects of online shopping, there are more browsers than buyers. Part of the reason for this is that many people prefer to make their actual purchase in stores. Others are worried about the security of their credit card information. Nonetheless, the Web is increasingly important to \u201cwindow shoppers\u201d \u2013 those gathering consumer information, doing price comparisons, checking out alternative purchases.\u00a0 <\/p>\n\n More than half of all health seekers have gathered information before visiting a doctor.\u00a0 Health seekers dealing with a chronic disease or disability are more likely to do their homework before a doctor\u2019s appointment.\u00a0 One member of the Harris Online focus group living with fibromyalgia said, \u201cI can at least go into the doctor\u2019s office with a good knowledge of what is going on and ways of treatment.\u201d<\/p>\n\n Nearly half of all health seekers (48%) have looked for alternative or experimental treatments or medicines.\u00a0 Those who have been treated for a serious illness in the past year are more likely to have done this \u2013 62%, compared with 48% of those who have escaped such a diagnosis.\u00a0 One focus group participant who is living with a chronic condition said, \u201cI hope to find new ways to treat myself without using medication.\u201d\u00a0 Another chronically ill participant agreed, saying, \u201cMost doctors are not up to date on alternative methods.\u201d<\/p>\n\n Thirty-nine percent of health seekers have looked for information about a mental health issue such as depression or anxiety.\u00a0 Those who have visited an emergency room for medical treatment in the past year are more likely to have looked for mental health information online \u2013 49%, compared with 37% of health seekers who have not been to the emergency room.\u00a0 In August 2000, 26% of health seekers said they had ever looked for this type of information.\u00a0 Although our survey ended August 6, 2001, this increased interest in mental health information probably accelerated in the wake of the September 11 terrorist attacks.\u00a0 As an indication of this, Michelle Pruett, media director for the National Mental Health Association, says the association\u2019s Web traffic increased by 50% from September to October and the top destination was \u201cCoping with Disaster,\u201d an information page for helping children deal with disaster-related anxiety. <\/p>\n\n Similarly, 33% of health seekers have looked for information about a sensitive health topic that is difficult to talk about, which is a big jump from the 16% of health seekers who said they had done this in August 2000. Men are more likely than women to have done this \u2013 38% of male health seekers, compared with 29% of female health seekers.<\/p>\n\n Frequent health seekers are more likely than occasional seekers to have tried every activity we asked about, from looking for weight control tips to diagnosing a medical condition on their own.\u00a0 For example, 74% of health seekers who go online at least several times a month have looked for information about nutrition, exercise, or weight control.\u00a0 Fifty-nine percent of Internet users who go online every few months or less have done this.\u00a0 Not surprisingly, health seekers who say the Internet has improved the way they take care of themselves are also more likely to have gone down all sorts of avenues in pursuit of medical advice \u2013 and to have found the right information the last time they did a search. <\/p>\n\n Most go it alone<\/strong> <\/p>\n\n To get a picture of Internet users\u2019 actual behavior, we asked health seekers to relate details about their most recent information search. Most health seekers (86%) just plunged right in to see what they could find rather than asking anyone for advice about which Web sites to use.\u00a0 Of the 14% of health seekers who asked someone for advice, most followed that counsel at least a little bit.\u00a0 However, 41% of health seekers who got advice said they ended up finding the information they wanted on their own. <\/p>\n\n Most use a search engine and visit a few sites<\/strong> <\/p>\n\n In keeping with other research into health seekers\u2019 habits,[5.numoffset=”5″ Harris Interactive Health Care News, Volume 1, Issue 21, June 26, 2001.] we found that the vast majority (86%) visit multiple sites when looking for health information and do not have one favorite site.\u00a0 Most start at a general, non-specialty Web site \u2013 a search engine or a portal. They surf to other sites after finding information or links to them on the general site. The typical range of sites visited is two to five.\u00a0 Eighty-nine percent of health seekers who visit multiple sites say that, in general, they start at a site like Yahoo or the AOL home page. Just 8% of health seekers who visit multiple sites say they are most likely to start at a specialized health site like WebMD.com. <\/p>\n\n Last time they searched for health advice, those who used a search query on a search engine were more focused on getting the information fast than finding a trusted name \u2013 45% started at the top of the search results and worked their way down; 39% read the results list and then clicked on the items that seemed to be the most relevant; and just 12% clicked on a site because they recognized the sponsor or name.<\/p>\n\n A small number consult one favorite site<\/strong> <\/p>\n\n About one in three health seekers (29%) has bookmarked health-related Web sites or saved them as a \u201cfavorite place\u201d for consultation again and again.\u00a0 Frequent and enthusiastic health seekers are more likely to have health-related bookmarks, as are those who saw a doctor in the past year.\u00a0 <\/p>\n\n When asked if they have one favorite site, 14% of health seekers said yes.\u00a0 Of that small group, 35% named WebMD.\u00a0 Other sites named by these \u201cfavorite-site\u201d health seekers include the Mayo Clinic site, the National Institutes of Health, InteliHealth, Medline, and DrKoop.com.\u00a0 One online focus group participant who is a fan of WebMD commented, \u201cI know it so well it is just easier to go to it every time I have a question.\u201d<\/p>\n\n About one quarter of health seekers with one favorite site say they first went to it because of a personal recommendation, usually from a friend or family member, and a small number got the tip from a doctor or other health professional.\u00a0 Another quarter of favorite-site health seekers saw an advertisement for the site.\u00a0 The third quarter found it through an Internet search, and another 12% just came across their favorite site while surfing the Web.\u00a0 One focus group participant said that he ended up getting good advice from health chat rooms recommended by \u201cclose friends who thought they would help.\u201d<\/p>\n\n Health seekers with a favorite site are often rewarded for their focused approach.\u00a0 Of the 41% of health seekers who went to a specialized health site or health portal site the last time they went online for health information, about half (53%) said the site delivered exactly what they needed.\u00a0 Thirty-seven percent of these focused health searchers went on to other sites.<\/p>\n\n For some health seekers, the need for detailed, specialized information is vitally important.\u00a0 One focus group participant who is living with 18% lung capacity put it this way: \u201cMost commercial sites have the basics of an illness.\u00a0 I am beyond basics.\u201d<\/p>\n\n Most are occasional users <\/strong> <\/p>\n\n Most health seekers are only occasional visitors to health and medical sites.\u00a0 Fifty-eight percent of health seekers use the Internet to look for medical advice or health information every few months or less.\u00a0 Forty-two percent of health seekers search for health information at least several times a month \u2013 4% do so every day, 13% search several times a week, and 25% search several times a month.\u00a0 Those in excellent health are less likely to haunt health Web sites than those who describe their health as good, fair, or poor.<\/p>\n\n Many are looking on behalf of someone else <\/strong> <\/p>\n\n Worrying about someone else\u2019s health issue is the No. 1 motivation for health seekers to go online for medical advice, whether for a friend, spouse, child, or parent.\u00a0 Eighty-one percent of health seekers have gone online because someone they know was diagnosed with a medical condition.\u00a0 In addition, 38% of health seekers have gone online because they are caring for someone else.\u00a0 Indeed, when asked about their last online health search, half of health seekers say they were looking on behalf of someone else. (See the separate section on caregivers, Page 29.)\u00a0 <\/p>\n\n New symptoms spur research for individuals<\/strong> <\/p>\n\n Fifty-eight percent of health seekers have gone online because they themselves were diagnosed with a new health problem.\u00a0 Other important motivating factors include being prescribed a new medication or treatment; dealing with an ongoing condition; having unanswered questions after a doctor\u2019s visit; and deciding to change diet or exercise habits. <\/p>\n\n The middle age groups (30-49 years old) are more likely than young health seekers or senior health seekers to be motivated to go online for all these reasons, except one. Older health seekers are more likely to go online for information about how to deal with an ongoing medical condition, such as diabetes or high blood pressure.\u00a0 Not surprisingly, those in less-than-excellent health are more likely to go online to research a new diagnosis or medication. There are few differences, however, when it comes to feeling underserved by a health professional \u2013 no single group is more motivated than another to go online because they had unanswered questions after a doctor\u2019s visit.<\/p>\n\n Searching from home to answer a specific question<\/strong> <\/p>\n\n The great majority of health seekers went online from home the last time they searched \u2013 80% of health seekers.\u00a0 Just 16% of health seekers went online from work the last time and 4% said they went online from somewhere else, such as a library or a friend\u2019s house.\u00a0 As one at-home mother said in an online focus group, \u201cIf I did work, I would probably be too embarrassed to look up stuff online.\u201d\u00a0 Another focus group participant echoed her concern, saying, \u201cI know we monitor the use of the Net at work and I have seen it work against people.\u201d<\/p>\n\n The last time they went online for health information, 62% of health seekers researched a specific illness or condition.\u00a0 When we asked what illness or condition they searched for, 12% of this subgroup of disease-researching health seekers said they were researching cancer.\u00a0 Other commonly named illnesses included diabetes, heart condition, arthritis, mental health, and conditions affecting the skin, kidneys, lungs, the brain, and bone density.\u00a0 The rest of those who looked for information on a specific illness revealed a wide range of concerns, from spider bites to autism.\u00a0 <\/p>\n\n Health seekers with one illness in mind were quite focused the last time they went online for information.\u00a0 They tended to be looking for information about medications or treatments for that particular illness, for details about the symptoms of that illness, and for the disease\u2019s prognosis. <\/p>\n\n The last time they went online for health information, 14% of health seekers sought information about specific doctors, hospitals or medicines.\u00a0 This is a notable increase from our August 2000 survey, which found that 9% of health seekers had searched for a specific doctor the last time. <\/p>\n\n Fourteen percent of health seekers sought information about fitness, nutrition, or general wellness the last time they went online for health information.\u00a0 Ten percent of health seekers sought information about a specific surgical or diagnostic procedure.\u00a0 Ten percent of health seekers went looking for basic health care news.\u00a0 <\/p>\n\n The recommended way to assess medical material<\/strong> <\/p>\n\n A substantial majority of health seekers do not follow the verification protocols recommended by experts such as the Medical Library Association when searching for information. The MLA recommends that searchers identify each site\u2019s sponsor, check the date of the information posted, and verify that the material is factual information, not opinion.\u00a0 The California HealthCare Foundation recommends that consumers take ample time to search for health advice, visit four to six sites, and discuss the information with a health care provider before making a treatment decision.\u00a0 Advocates for privacy, such as the Center for Democracy and Technology, recommend reading a site\u2019s privacy policy very carefully \u2013 and writing a protest email to any site that doesn\u2019t post a policy.<\/p>\n\n In fact, most health seekers go online without a fixed destination in mind. The typical health seeker starts at a search site, not a medical site, and visits two to five sites.\u00a0 She feels reassured by advice that matches what she already knew about a condition and by statements that are repeated at more than one site.\u00a0\u00a0 She is likely to turn away from sites that seem to be selling something or don\u2019t clearly identify the source of the information.\u00a0 And about one third of health seekers who find relevant information online bring it to their doctor for a final quality check. <\/p>\n\n Respondents seemed to fall into three groups \u2013 about a quarter of them are vigilant about verifying a site\u2019s information, another quarter are concerned but follow a more casual protocol, and about half mostly avoid the kind of search strategies experts recommend. And although health seekers are generally wary about revealing their identity online or having their activities tracked, only about one in five have checked a site\u2019s privacy policy. <\/p>\n\n Health seekers\u2019 basic presumptions<\/strong> <\/p>\n\n Health seekers generally start their searches in a confident frame of mind \u2013 and this might be the reason that so many avoid digging into the background of the information they are retrieving. Fully 72% of health seekers say you can believe all or most of the health information online.\u00a0 Part of the reason for their upbeat assessment might stem from the fact that 69% of health seekers say they have not seen any wrong or misleading health info on the Web \u2013 although 28% of health seekers have seen bad information.\u00a0 It should be noted that consumers\u2019 radar is not as highly tuned as a health professional\u2019s \u2013 consumers may not be aware of what is not<\/i> readily found on the Web. It also could be the case that health seekers are so pleased with the convenience of getting health information online that they forgive any shortcomings of online medical advice.\u00a0 In our August 2000 survey, 93% of health seekers said it is important that they can get health information when it is convenient for them.\u00a0 One focus group participant said the Internet makes it \u201cso easy to look up things\u201d and \u201cgo deeper into the problem\u201d that she frequently uses it to check her doctor\u2019s diagnosis or her mother\u2019s advice.<\/p>\n\n If it fits with what they\u2019ve already heard, they believe it <\/strong> <\/p>\n\n [It]<\/p>\n\n\n At the same time as they are relying on online information that confirms what they already believe, most health seekers also pick up new insights about medical conditions or treatments when they do their searches. Eight out of ten successful searchers said they learned something new the last time they went online for health information. <\/p>\n\n When they read the same facts at different sites, health seekers\u2019 trust in those sites grows<\/strong> <\/p>\n\n If a site confirms what they already know or they found similar information on multiple sites, health seekers were more confident in those sites. Of the health seekers who visited two or more sites during their last search and found what they were looking for, two thirds (67%) say the multiple sites provided mostly the same information.\u00a0 A majority of multiple-site searchers who found similar information on different sites say the similarities gave them more confidence in the sites \u2013 49% say it gave them a lot more confidence, 38% say it gave them a little more confidence.\u00a0 Eleven percent of multiple-site searchers who saw similar information say it did not give them more confidence.\u00a0 <\/p>\n\n A participant in an online focus group said that he trusts information more if he sees it on more than one site, saying, \u201cThere is a lot of bogus info out there but at least it is a starting point.\u201d\u00a0 Another participant said, \u201cOn the Internet you can get four or fifty different opinions and if they are all the same advice your doctor gave you, you can relax and not wonder if he was right or if his info is dated.\u201d<\/p>\n\n It is important to note that some health-related content is syndicated and may appear on multiple sites.\u00a0 Consumers may think they have verified a piece of information by reading two sources, but in fact may have simply re-read the same material from the same syndicate at two different Web sites.\u00a0 For example, Well-Connected reports about common diseases and wellness issues have appeared on WebMD, CBS HealthWatch, MDConsult.com, and Discovery Health.[6.numoffset=”6″ See http:\/\/www.well-connected.com\/rreports\/doc999full.html<\/a>]<\/p>\n\n One third of multiple-site searchers (30%) say the different Web sites they visited provided different information.\u00a0 The fact that they found different information at different places had a smaller effect on health seekers than the similarity of information had on searchers.\u00a0 One fourth of multiple-site searchers who had found differing opinions say the differences gave them less confidence in the Web sites \u2013 6% say it gave them a lot less confidence and 17% say it gave them a little less confidence.\u00a0 Three-quarters of these multiple-site searchers (76%) say it did not give them less confidence in the sites. Perhaps this reflects recognition by health seekers that there is often not uniform advice from the medical establishment about how to treat some medical conditions.<\/p>\n\n Health seekers\u2019 information assessment screens<\/strong> <\/p>\n\n Other researchers have spelled out the factors that potentially affect a user\u2019s decision to visit a certain Web site.\u00a0 For example, the Utilization Review Accreditation Commission (URAC), a nonprofit accreditation organization, asked health seekers to rate the importance of various features to be found on health Web sites.\u00a0 Its survey found that a \u201cseal of approval,\u201d links to related sites, interactive tools, and a list of sponsors would increase consumer trust in a health Web site.[7. URAC\/Harris Interactive, \u201cConsumers and Health Web Sites,\u201d May 17, 2001.]\u00a0 In a more general survey conducted for Consumer WebWatch, 80% of Internet users said it is \u201cvery important\u201d that a site is easy to navigate. Just 19% of Internet users said that a seal of approval is \u201cvery important\u201d when it comes to deciding whether to visit a site.[8. Princeton Survey Research Associates, \u201cA Matter of Trust: What Users Want From Web Sites,\u201d April 16, 2002. Available at: http:\/\/www.consumerwebwatch.org\/news\/1_abstract.htm<\/a>]<\/p>\n\n Since many surveys have asked questions in the abstract (\u201cWhich of the following do you think is the most important attribute for a health related Web site to have?\u201d), we decided to ask health seekers to describe steps they had actually taken to check facts or reject a Web site\u2019s advice. <\/p>\n\n When users are asked about the reasons they have rejected information from a health Web site, many report that they have taken the expert advice to heart.\u00a0 They turn away from sites that do not identify the source or date of the information. But they add a few tests of their own. E-patients say that overt commercialism is the No. 1 reason they have turned away from a site.\u00a0\u00a0 Forty-seven percent of health seekers have decided not to use information they found because the Web site was too commercial and seemed more concerned with selling products than providing accurate information.<\/p>\n\n In the Harris Online focus group, health seekers were asked what factors make them feel a particular resource is not trustworthy.\u00a0 An overabundance of advertising, particularly \u201cpop-up\u201d ads, made a few participants\u2019 lists of negative factors.\u00a0 One woman took a hard line and said, \u201cIf a site has a shopping cart I don’t go back.\u201d\u00a0 <\/p>\n\n Health seekers also pay attention to what many experts believe is one of the most important factors in judging the quality of online health information \u2013 they look for the source[9. See the Medical Library Association\u2019s \u201cGuide to finding and evaluating health information on the Web\u201d at the end of this report.] Forty-two percent of health seekers have turned away from online information because they couldn\u2019t determine the source or author of the information.\u00a0 Not every e-patient looks for the source every time she goes online, however.\u00a0 When asked if they check the source, 58% of health seekers who go to multiple health Web sites say they do so \u201cmost of the time\u201d or \u201calways.\u201d\u00a0 Fifty-five percent of health seekers who consult one favorite site say they have checked the source of the information on that site.\u00a0 When thinking about what would make him trust a site, one focus group participant said he looks for the name of \u201ca reputable doctor that I have seen on television or who has printed articles in notable journals.\u201d\u00a0\u00a0 <\/p>\n\n Men are more likely than women to blame a site\u2019s sloppy or unprofessional design as the reason for turning away from the information.\u00a0 Younger health seekers are also more influenced by the site\u2019s design than older users.\u00a0 Otherwise, there were no notable differences among demographic groups for the other information quality signals.<\/p>\n\n Commercialization and search engines<\/strong> <\/p>\n\n Overt commercialism erodes the credibility of health sites, but what about subtler influences?\u00a0 Consumer WebWatch, a project partly funded by the Pew Charitable Trusts, found that only 39% of Internet users knew that some search engines are paid to list some sites more prominently than others.\u00a0 When told about the practice, 80% of Internet users said it was important for search engines to disclose these arrangements.\u00a0 But only 30% of Internet users said they are less likely to use a search engine that accepts money to promote certain sites and fully 56% of Internet users said it makes no difference to them.[10. Princeton Survey Research Associates, see above.]<\/p>\n\n A typology of health seekers<\/strong> <\/p>\n\n About one quarter of health seekers say they always check the source, date, and privacy policy on a health Web site.\u00a0 These Vigilant health seekers are more likely than other types of health seekers to say the Internet has improved the way they take care of their health \u2013 72%, compared with 63% of Concerned health seekers and 54% of Unconcerned health seekers.\u00a0 This group seems to approach the search for health information quite methodically, trusting search engines to some degree, but clicking on a recognized name more often than the other two groups.\u00a0 Vigilant health seekers are more likely to take their time and visit many sites during a typical search.\u00a0 Seventy percent of Vigilant health seekers spent more than half an hour online during their last foray, compared with 52% of Unconcerned health seekers who devoted that much time.\u00a0 Thirty-one percent of Vigilant health seekers went to four or five sites the last time, compared with 16% of Unconcerned health seekers who did the same.\u00a0 Vigilant health seekers are by far the most likely to talk to a health care professional about what they found online \u2013 51% of Vigilant health seekers did so the last time they searched for health information, compared with 25% of Unconcerned health seekers.<\/p>\n\n Another one quarter of health seekers say they check the source, date, and privacy policy of a health Web site \u201cmost of the time.\u201d\u00a0 This group seems to trust the search engines to return good results more than the other two groups.\u00a0 Concerned health seekers are the most likely to start at the top of the search results list instead of reading the explanations or looking for a trusted name.<\/p>\n\n Concerned health seekers are as likely as Vigilant health seekers to go online because they are dealing with an ongoing medical condition. Concerned and Vigilant health seekers are also equally likely to have turned away from a health site because they could not determine the source or author of the information.<\/p>\n\n About half of all health seekers say they check the source, date, and privacy policy of a health Web site \u201conly sometimes,\u201d \u201chardly ever,\u201d or \u201cnever.\u201d\u00a0 They are the least likely to say the Internet has improved the way they take care of their health. Unconcerned health seekers are the least likely group to be living with a chronic illness like diabetes or high blood pressure.\u00a0\u00a0 Unconcerned health seekers are, not surprisingly, the least likely to have turned away from a health site because they could not determine the source or author of the information \u2013 31%, compared with 52% of Vigilant health seekers.\u00a0 Unconcerned health seekers seem to be in a hurry \u2013 they are more likely than the other groups to visit between one and three sites and to spend less than half an hour on a typical search for health information.\u00a0 Unconcerned health seekers are also the least likely to talk to a medical professional about what they found online.<\/p>\n\n A small minority of health seekers is going online instead of seeing a doctor.\u00a0 Fourteen percent of health seekers say they\u2019ve gone online because they didn\u2019t have time to see a doctor.\u00a0 Eight percent say they have gone online because they couldn\u2019t get a referral or an appointment with a specialist.\u00a0 Asked in a different way, a total of 18% of health seekers say they have gone online to diagnose or treat a medical condition on their own, without consulting their doctor. Those who have been treated for a serious illness in the past year are more likely to use the Internet to self-diagnose, as are those who have gone to the doctor at least once in the past year, so these are not necessarily people who reject a doctor\u2019s advice altogether.\u00a0 They are supplementing their care with advice gleaned from the Internet.\u00a0 For example, one focus group participant who is living with a chronic illness said that he finds health Web sites \u201chelp clarify some of the things I don\u2019t quite understand\u201d after a doctor\u2019s appointment.<\/p>\n\n However, another participant in an online focus group lauded the Internet\u2019s ability to help him avoid the doctor\u2019s office: \u201cWhen I get sick, I know what to do to get rid of the cold without going to the doctor.\u201d\u00a0 Another said, \u201cI don’t see a doctor unless I am really sick. If I have any questions I check out Internet sites.\u201d <\/p>\n\n After their most recent health search, more than one third of successful searchers (37%) talked to a doctor or other health care professional about the information they found online.\u00a0 Two thirds of successful searchers (63%) said they did not talk to a health care professional about what they found \u2013 mostly because the health seeker deemed the topic too insignificant to seek expert advice.\u00a0 This finding is consistent with an August 2000 Pew Internet Project survey and may reflect consumers\u2019 confidence in their decision-making abilities rather than a fear of rejection by their doctor or their rebellion against a doctor.\u00a0 Just 2% of those who did not talk to a doctor say it was because they didn\u2019t think their doctor would listen. <\/p>\n\n Indeed, health professionals seem to be receptive to those consumers who bring in the information they find online.\u00a0 Thirty-one percent of those who talked to their doctor say he was \u201cvery interested\u201d and 48% say their doctor was \u201csomewhat interested\u201d in the information found online.\u00a0 Just 13% of successful searchers who chose to talk to their doctor got the cold shoulder and report that the health care professional was \u201cnot too interested\u201d or \u201cnot at all interested.\u201d\u00a0 Despite the American Medical Association\u2019s cautions to consumers against online information[11. See http:\/\/www.ama-assn.org\/ama\/pub\/category\/1905.html<\/a>], a 2001 Harris Interactive poll[12. \u201cThe Increasing Impact of eHealth on Physician Behavior,\u201d Harris Interactive Health Care News, Volume 1, Issue 31, November 13, 2001.] found that doctors are using the Internet to increase their medical knowledge and improve the care they provide to patients.\u00a0 It is therefore not surprising to hear that more and more doctors are receptive to patients going online to gather more information.\u00a0 <\/p>\n\n When we asked focus group participants about their relationships with their doctors, most confirmed the positive trend toward receptive doctors.\u00a0 One participant said he talks to his doctor about what he finds online because \u201csometimes I just need his reassurance I interpreted my info correctly.\u201d\u00a0 However, another participant had a different experience when she brought in Web printouts, relating that her doctor \u201cgot mad, like I didn’t trust him.\u00a0 Actually, I didn’t.\u00a0 So I changed doctors.\u201d<\/p>\n\n Health care professionals also were likely to agree with the information a successful searcher found online.\u00a0 Eighty-two percent of health seekers who discussed what they found with a health care professional said the doctor or nurse agreed with the information.<\/p>\n\n Health seekers who say the Internet has improved the way they take care of their health are more likely to talk with a doctor about what they found online.\u00a0 Forty percent of these enthusiastic health seekers did so, compared with 30% of those who are less keen on Internet health information.<\/p>\n\n Of the 63% of successful searchers who did not talk to a health care professional about what they found, 43% say the topic wasn\u2019t a health issue that required a visit or phone call with a doctor. Seventeen percent say they had done the research on someone else\u2019s behalf and therefore did not discuss it with a health professional.\u00a0 Twelve percent say they didn\u2019t think the information was worth mentioning.\u00a0 Eight percent say they were checking on their doctor\u2019s diagnosis, so they already had his or her opinion on the topic.\u00a0 For example, one participant in an online focus group said she usually goes to see her doctor when she\u2019s not feeling well and then goes online \u201cto see if he is on track with his information.\u201d <\/p>\n\n Seven percent of successful searchers who did not talk to a health care professional about what they found say they haven\u2019t had time to see the doctor about it yet.\u00a0 Small numbers of health seekers say they forgot to bring it up, thought the doctor wouldn\u2019t listen, or say it was too difficult to talk about with a health care professional.<\/p>\n\n Successful searches<\/strong> <\/p>\n\n Eight in ten health seekers found most or all of the information they looked for online the last time they searched.\u00a0 Fourteen percent of health seekers say they just ran out of time and had to stop looking, whether or not they had all the answers they needed.\u00a0 A very small minority of health seekers (6%) said they couldn\u2019t find the information they were looking for and gave up.<\/p>\n\n Age is a factor associated with successful searching. The youngest health seekers (18-29 years old) are more likely to say they \u201calways\u201d find the information they are looking for online.\u00a0 Younger users are no more likely to have found one favorite site or other stratagem \u2013 they were easier to please, more confident of their search skills, or both. <\/p>\n\n Health seekers who are living with a chronic disease or disability are most likely to say they gave up before finding the right information, possibly because they are looking for more detailed or rarer kinds of material.\u00a0 Success did not depend on whether the health seeker has one favorite site or visits many different sites \u2013 the vast majority of both groups found what they were looking for.<\/p>\n\n Health sites please users more than they please health care professionals. The results of the California HealthCare Foundation\/RAND study demonstrated those concerns: \u201cOnly half of the topics that the expert panels thought were important for consumers were covered more than minimally.\u201d[13.numoffset=”13″ Berland (2001).]\u00a0 In addition, they found that most of the content was written at a high school or college reading level \u2013 much higher than the sixth-grade reading level recommended by experts concerned about consumers\u2019 ability to understand the information.\u00a0 However, some of our respondents suggested that high-level writing may inspire trust in the site.\u00a0 One participant in our online focus group said, \u201cWhen I can only half understand what they’re saying, I start to feel they’re competent.\u201d<\/p>\n\n The vast majority of health seekers who found the information they were looking for said it was easy to find \u2013 61% said it was \u201cvery easy\u201d and 33% said it was \u201csomewhat easy.\u201d<\/p>\n\n The California HealthCare Foundation\/RAND study recommends spending at least 30 minutes on a search to be sure a health seeker has delved deeply into a topic.\u00a0 During a typical search, most health seekers exceed the recommended time allowance.\u00a0 The last time they went online for health information, 12% of health seekers spent less than 15 minutes and 27% spent between 15 and 30 minutes.\u00a0 Thirty-five percent of health seekers spent between a half hour and an hour online.\u00a0 Nineteen percent of health seekers spent one to two hours online and 7% spent more than 2 hours online the last time.\u00a0 <\/p>\n\n The last time they went online for health information, 51% of successful searchers said they found the information they needed on a site they were already familiar with or had used in the past.\u00a0 Forty-four percent of successful searchers said they found the information on a site they had never heard of before.\u00a0 Three percent of successful searchers said they had found the information on both familiar and unfamiliar sites.\u00a0 <\/p>\n\n Those in excellent health are more likely to have chanced upon relevant health information \u2013 probably because they do not need to search very frequently and are less familiar with health sites.\u00a0 Those in less-than-excellent health are more likely to have visited a familiar site and found what they needed, as are people who search for health information more frequently.<\/p>\n\n In a survey in January 2002, we asked Internet users whether they themselves had dealt with an illness in the past two years.\u00a0 Seventeen percent said yes, and about one in four of those Internet users say the Internet played a key role in the way they took care of themselves.\u00a0 Women were twice as likely as men to report that their use of the Internet played an important or crucial role in their coping with sickness. And those aged 50-64 were more likely than other age groups to report a significant impact from their use of the Internet. <\/p>\n\n In our special survey of health seekers, 61% of respondents say the Internet has improved the way they take care of their health either \u201ca lot\u201d or \u201csome.\u201d\u00a0 This is a significant increase from an August 2000 Pew Internet Project poll that found that 48% of health seekers said the Internet improved the way they take care of themselves.\u00a0 Indeed, about 45 million Americans now say the Internet has improved the way they take care of their health, compared with 25 million Americans who said that in August 2000.<\/p>\n\n Health information\u2019s impact<\/strong> <\/p>\n\n Health seekers are mostly going online to look for specific answers to targeted questions. Often, this information helps them make informed decisions, but it rarely induces them to make a wholesale change in their approach to health care.<\/p>\n\n Most of those who have completed successful searches report that the impact of those searches was modest. Of the health seekers who found the information they needed the last time they went online for medical advice, 16% say the information had a major impact on their own health care routine or the way they care for someone else; 52% say the information had a minor impact; 31% say it had no impact at all.\u00a0 The impact was equally felt among all groups \u2013 old, young, men, women, college-educated or not.\u00a0 <\/p>\n\n Those who searched on behalf of a loved one were as likely to say the information had an impact as those who searched for answers to their own health questions. <\/p>\n\n [then]<\/p>\n\n\n Of the successful searchers, 44% said the information they found online affected a decision about how to treat an illness or cope with a medical condition.\u00a0 Again, there was no significant difference between those who searched on behalf of someone else and those who searched on behalf of themselves.\u00a0 The only topics that prompted dramatically different answers from these two groups were diet, exercise, and stress.\u00a0 Forty-one percent of health seekers looking for information for themselves say they changed the way they think about diet, exercise, and stress based on what they found online.\u00a0 Just 20% of health seekers looking on behalf of someone else felt the same way.<\/p>\n\n About one in three health seekers know someone who has been significantly helped by following medical advice or health information they found on the Internet.\u00a0 Fittingly, those most in need are most likely to reap the benefits of online health information.\u00a0 Fully 51% of those who have been treated for a serious illness in the past year say they or someone they know was significantly helped by following advice they found on the Internet. <\/p>\n\n [online health information]<\/p>\n\n\n [my doctor]<\/p>\n\n\n Just 2% of health seekers know someone who has been seriously harmed by following medical advice or health information they found on the Internet.\u00a0 While this small number may cheer advocates of online health information, it serves as a warning for e-patients who may rely too heavily on the advice they find on the Web.\u00a0 For example, in a case reported in the March 2002 issue of Pediatrics<\/i>, a one-year-old boy suffering from diarrhea was brought to an emergency room.\u00a0 A clinician incorrectly advised his parents to stop giving him solid foods, but to provide fluids for rehydration.\u00a0 The parents independently searched online and found similar advice on an unidentified Web site, so they continued the treatment recommended at the hospital.\u00a0 Over the next few days, the child become increasingly weak and eventually was admitted to the hospital, where he recovered.[14.numoffset=”14″ Reported in iHealthBeat on March 28, 2002. Available at http:\/\/www.ihealthbeat.org<\/a>.] Of course, it was a medical professional who made the first mistake, but the inaccuracy on the Web site exacerbated the problem.<\/p>\n\n Few go beyond Web searching<\/strong> <\/p>\n\n Most health seekers stuck to Web searching the last time they went online for health information, but 3% communicated online with a health care professional, such as a doctor or nurse.\u00a0 Another 3% communicated with a Webmaster of a particular health Web site, while yet another 3% communicated with members of an online support group at some point in their last online search.<\/p>\n\n These small numbers are consistent with an August 2000 Pew Internet Project survey which found that 9% of health seekers said they had ever used email or gone to a Web site to communicate with a doctor or a doctor\u2019s office.\u00a0 However, when asked if they would like to communicate with their doctor online, health seekers in an online focus group were very receptive \u2013 as long as the doctor actually replied in a timely manner.\u00a0 As one man who does exchange email with his doctor said, \u201cIt is faster to call.\u201d A 2002 Harris Interactive poll found that 90% of Internet users would like to email their doctor\u2019s offices \u2013 and 37% would be willing to pay for the service.[15.numoffset=”15″ Harris Interactive Health Care News, Volume 2, Issue 8, April 10, 2002.]\u00a0 As further evidence that email is gaining a foothold, a 2001 Harris Interactive poll found that many doctors were initially skeptical about the benefits of online tools, but were pushed by patients to start using email and now say it has increased patient satisfaction.[16. Harris Interactive Health Care News, Volume 1, Issue 31, November 13, 2001.]<\/p>\n\n Just one in ten health seekers has ever participated in an online support group or email list for people concerned about a particular health or medical issue. This activity showed little increase from last year \u2013 in both the August 2000 and June-August 2001 surveys, 9% of health seekers say they have ever participated in an online support group.\u00a0 Frequent health seekers are more likely to have joined an online support group \u2013 13% of those who look for health information several times a month or more have done so, compared with 6% of those who look every few months or less.\u00a0<\/p>\n\n In an online focus group discussion about why they do not participate in support groups, health seekers cited privacy concerns and the need for a \u201cloving voice\u201d instead of an on-screen note.\u00a0 One woman said, \u201cIt seems a bit personal to be chatting about things like that, plus you are exposed in a way on the Internet. Anyone could see what you wrote.\u00a0 Confidentiality is a real big thing with me.\u201d\u00a0 But other participants say the benefits outweigh the risk, and one argued, \u201cBut it’s not like they know you, or will ever see you, so why not?\u201d <\/p>\n\n Though the numbers are small, those who are most in need are more likely to take advantage of online support groups.\u00a0 Ten percent of health seekers in fair or poor health consulted an online support group the last time they searched for health information, compared with just 1% of those in excellent health.\u00a0 And 14% of those in fair or poor health have ever participated in an online support group, compared with 5% of those in excellent health.<\/p>\n\n Instead of treating the Internet as a vast library, some health seekers are joining online communities that allow them to provide support and keep up with the latest research. In an online focus group, one man living with emphysema said he spends eight hours per day online, scouring Web sites and passing on his knowledge to other members of his online support group, Efforts.[17. http:\/\/www.emphysema.net\/<\/a>]\u00a0 He is grateful to the group for giving him hope, especially in the early days of his diagnosis, saying, \u201cKnowledge is key in living with a progressive and fatal disease.\u00a0 I know pretty much what will take my life.\u00a0 Now I am learning how to hold it off.\u201d\u00a0 Another focus group participant’s sister has epilepsy and was thinking about getting pregnant, so they dropped into an epilepsy support group to get advice before talking to her doctor about it.\u00a0 Indeed, 33% of health seekers have looked for information about a sensitive health topic that is difficult to talk about \u2013 some people feel more comfortable asking strangers or believe that someone who has been in their situation will advise them better than a health professional can.[18. \u201cE-Patients Prefer eGroups to Doctors for 10 of 12 Aspects of Health Care,\u201d published in The Ferguson Report, Number 1, March 1999. Available at http:\/\/www.fergusonreport.com\/archives\/idx9903.htm<\/a>]<\/p>\n\n There is evidence that peer support can not only improve the way someone feels but cut costs as well.\u00a0 A randomized study of 580 people with chronic back pain showed that those who participated in an email discussion group with other patients and three expert moderators experienced less pain and saw their doctor less than those who did not participate.[19. Kate R. Lorig et al.,\u201cCan a Back Pain E-mail Discussion Group Improve Health Status and Lower Health Care Costs?\u201d Archives of Internal Medicine. April 8, 2002. Vol. 162, No. 7. Available at http:\/\/archinte.ama-assn.org\/issues\/v162n7\/abs\/ioi10219.html<\/a>]<\/p>\n\n![\"Health](\"https:\/\/alpha.pewresearch.org\/pewresearch-org\/internet\/wp-content\/uploads\/sites\/9\/media\/20394B536F9A4059BCF78137EB2C8E27.jpg\")
<\/figure>\n<\/p>\n\nPart Two: Hot topics<\/h3>\n\n
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<\/figure>\n<\/p>\n\nPart Three: Search strategies<\/h3>\n\n
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<\/figure>\n<\/p>\n\n![\"Motivations:](\"https:\/\/alpha.pewresearch.org\/pewresearch-org\/internet\/wp-content\/uploads\/sites\/9\/media\/B37B172DDA0C42408973C14E7FAF1349.jpg\")
<\/figure>\n<\/p>\n\nPart Four: Evaluating the quality of health information<\/h3>\n\n
![\"Evaluating](\"https:\/\/alpha.pewresearch.org\/pewresearch-org\/internet\/wp-content\/uploads\/sites\/9\/media\/A106016A05DB4BBDB02AD5D6A0B11183.jpg\")
<\/figure>\n<\/p>\n\n\n
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Health seekers still rely on doctors for guidance and fact-checking<\/h4>\n\n
Part Five: Results<\/h3>\n\n
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<\/figure>\n<\/p>\n\nPart Six: Impact<\/h3>\n\n
![\"Impact\"](\"https:\/\/alpha.pewresearch.org\/pewresearch-org\/internet\/wp-content\/uploads\/sites\/9\/media\/A1BB3EB677534113A05A79AC865CEE2E.jpg\")
<\/figure>\n<\/p>\n\nPart Seven: Email, support groups, and personalization<\/h3>\n\n