As in past surveys, we asked respondents to think about the last time they went online for health or medical information, hoping to capture a portrait of a typical health search.[8.numoffset=”8″ \u201cOnline Health Search 2006\u201d (Pew Internet & American Life Project, Oct. 29, 2006). Available at: https:\/\/alpha.pewresearch.org\/pewresearch-org\/internet\/PPF\/r\/190\/report_display.asp; \u201cVital Decisions: How internet users decide what information to trust when they or their loved ones are sick\u201d (Pew Internet & American Life Project, May 22, 2002). Available at: https:\/\/alpha.pewresearch.org\/pewresearch-org\/internet\/PPF\/r\/59\/report_display.asp<\/a>]<\/em> <\/p>\n\n Fifty-three percent of e-patients with chronic conditions say their last search was related to their own health or medical situation. Twenty-nine percent of e-patients with chronic conditions say their last search was on behalf of someone else. Thirteen percent of e-patients with chronic conditions volunteered that their last search was both for themselves and for someone else. <\/p>\n\n By contrast, e-patients with no chronic conditions are likely to be acting in a caregiver role, gathering information on behalf of someone else. Fifty-one percent of e-patients with no chronic conditions say the last time they went online for health or medical information, their quest was related to someone else\u2019s situation; 7% say their last search was for both themselves and<\/i> for someone else. Thirty-three percent of health seekers say their last search was in relation to their own health or medical situation.<\/p>\n\n During their last online health inquiry, 56% of e-patients living with disability or chronic disease began with a search on a general search engine like Google or Yahoo. Thirty-seven percent of e-patients with chronic conditions skipped the search and went right to a specific website they know provides health information.<\/p>\n\n Opportunity:<\/strong> If health care providers have sites or key words to recommend, e-patients with chronic conditions may be especially receptive.<\/p>\n<\/blockquote>\n\n By contrast, 67% of e-patients with no chronic conditions say their last query began at a general search engine. Twenty-six percent of e-patients with no chronic conditions say their last health information session began by going to a specific health website.<\/p>\n\n One in five e-patients, regardless of health status, visited just one site the last time they got health information online. The majority visited two or more sites. The following responses from e-patients with chronic conditions are not statistically different from answers provided by e-patients who report no disability or chronic disease:<\/p>\n\n The Health Information National Trends Survey (HINTS), sponsored by the National Cancer Institute, found a significant disparity between what people say is their preferred source of information about cancer and where they actually go to gather it. In a national survey conducted in 2003, 49% of adults said they would go first to a health care provider if they had a strong need to get information about cancer. In the same survey, however, people who said they had recently looked for cancer information for themselves were likely to say they looked online \u2013 46%, vs. 11% who had consulted a health care professional.[9.numoffset=”9″ See http:\/\/hints.cancer.gov\/<\/a>]<\/p>\n\n The Pew Internet Project\u2019s 2006 survey finds that e-patients living with disability or chronic disease are more likely than other e-patients to take advantage of both online and offline information sources. Fully 49% of e-patients with chronic conditions talked with a health professional about what they found online during their most recent search, compared with 30% of e-patients with no chronic conditions, possibly because those living with chronic conditions are highly likely to have seen a doctor in the past year. <\/p>\n\n In addition to a telephone survey, which provided all numerical data covered in this report, the Pew Internet Project asked members of the Association of Cancer Online Resources (ACOR) to write essays about their use of internet health resources.[10. Barbara K. Rimer, Ph.D., dean of the University of North Carolina\u2019s School of Public Health, has led in-depth studies of ACOR members. For example, \u201cHow Cancer Survivors Provide Support on Cancer-Related Internet Mailing Lists\u201d (Journal of Medical Internet Research:<\/em> Vol 9, No 2, 2007). Available at: http:\/\/www.jmir.org\/2007\/2\/e12<\/a>] Many ACOR respondents describe their doctors as supportive \u201cpartners\u201d or \u201cteammates\u201d in their care. As one e-patient wrote, \u201cFortunately, we had a doctor with a sense of humor and who was not an Ultimate Authority on Everything. He was open to the things we learned online. If he hadn\u2019t been, maybe we\u2019d have changed doctors.\u201d Another e-patient wrote, \u201cWith the information I have gathered on the internet\u2026I have used my doctors more as expert consultants\u2026They seem to appreciate that I am an informed and educated patient and are very willing to work with me on that basis. The only downside to this approach is that perhaps they assume that I know more than I do, but then I just go back and do more research.\u201d<\/p>\n\n However, there is a significant group of e-patients with chronic conditions who do not discuss their online research with a medical professional. It may be that the e-patients do not wish to share their findings or it may be that doctors discourage such conversations. As one person wrote, \u201cI have not found a doctor who wants their patients to use the web.\u201d The 2005 HINTS survey suggests that this perception of disinterested doctors may need to be updated. About half of internet users in that survey said they have ever talked to a doctor, nurse, or other health care provider about online health information, and of those, only 8% encountered a health professional who was \u201cnot at all interested.\u201d Fully 73% of e-patients who discussed their online research encountered health professionals who were \u201cvery\u201d or \u201csomewhat\u201d interested in their findings.<\/p>\n\n Opportunity: <\/strong>Health care providers may want to make \u201cDo you ever go online for health information?\u201d a standard question.<\/p>\n<\/blockquote>\n\n Just 9% of e-patients with chronic conditions say their last health information query had a major impact on their own health care or the way they care for someone else. Forty-three percent of e-patients with chronic conditions say their last search had a minor impact. Another 43% of e-patients with chronic conditions report that their last search had no impact at all on their own or someone else\u2019s care. These responses are not significantly different from those provided by e-patients who report no disability or chronic disease.<\/p>\n\n However, e-patients living with chronic disease or disability who reported any impact, major or minor, were significantly more likely than other e-patients to describe the following four effects:<\/p>\n\n Opportunity:<\/strong> Online research may be part of a \u201ccoached care\u201d program to help people get the most out of their health care. <\/p>\n<\/blockquote>\n\n One e-patient wrote, \u201cDoctors are always in a hurry. By researching online I can find information that fills in gaps in my knowledge, and allows me to ask better questions of the doctor. I also find out information that the doctor hasn\u2019t shared with me, but it is important for me to understand my disease.\u201d<\/p>\n\n We gave respondents eight different ways \u2013 four positive and four negative \u2013 to describe how they felt during their last search for health information online. It is striking that for all e-patients, positive assertions about the impact of their online health searches significantly overshadowed negative responses. The following responses were in line with answers from the general population of internet users who go online for health information:<\/p>\n\n One question elicited different responses from the two groups:<\/p>\n\n [my disease]<\/p>\n\n\n Few e-patients are vigilant about checking key information quality indicators of the information they find online, regardless of health status.<\/p>\n\n Just 14% of e-patients living with disability or chronic disease say they \u201calways\u201d check the source and date of the health information they find online, while another 18% say they do so \u201cmost of the time.\u201d Sixty-seven percent of e-patients with chronic conditions say they check the source and date \u201conly sometimes,\u201d \u201chardly ever,\u201d or \u201cnever.\u201d These figures are not markedly different from the responses provided by other e-patients, although those living with chronic conditions are less likely than those with no chronic conditions to say they \u201cnever\u201d check the source and date (13%, compared with 22%).<\/p>\n\n The Pew Internet Project\u2019s 2006 survey findings stand in contrast to our 2001 survey: e-patients with serious concerns were likely to be vigilant in their attention to the source and date of the information they found.[11.numoffset=”11″ \u201cVital Decisions\u201d (Pew Internet & American Life Project: May 22, 2002). Available at: https:\/\/alpha.pewresearch.org\/pewresearch-org\/internet\/Reports\/2002\/Vital-Decisions-A-Pew-Internet-Health-Report.aspx<\/a>]<\/p>\n\n E-patients may be giving up on a search for a needle in a haystack. The U.S. Department of Health and Human Service\u2019s Office of Disease Prevention and Health Promotion, working with industry experts, identified six types of information that should be publicly disclosed to health seekers: the identity of the site\u2019s sponsors, the site\u2019s purpose, the source of the information provided, privacy policies to protect users\u2019 personal information, how users can provide feedback, and how the content is updated. Of the 102 websites reviewed for the 2006 report, none met all six of the disclosure criteria and only six complied with more than three criteria. Just 4% of \u201cfrequently visited\u201d health websites disclosed the source of the information on their pages and 2% disclosed how the content is updated. Less-popular health sites fared even worse: 0.3% of these sites listed their content\u2019s source and only 0.1% disclosed how the content is updated.[12. \u201cReport on Objective 11-4: Estimating the Proportion of Health Related Websites Disclosing Information That Can Be Used to Assess Their Quality\u201d (Department of Health and Human Services, May 30, 2006). Available at: http:\/\/www.health.gov\/communication\/healthypeople\/obj1104\/default.htm<\/a>] As the online health market expands, this issue will most likely grow along with the number of websites available to consumers.<\/p>\n\n Opportunity:<\/strong> The Medical Library Association (http:\/\/www.mlanet.org\/<\/a>) provides tips and resources for consumers who want to be sure they are accessing the best information available.<\/p>\n<\/blockquote>\n\n It is important to note that e-patients may have turned to other quality controls in the face of a fruitless search for source and date information. For example, one e-patient wrote, \u201cHaving access to medical journal articles and others\u2019 opinions of articles were the reason that my brother lived much longer than expected and had an improved quality of life. Being able to email world specialists and\/or call them for help made a huge difference in his medical care with his local doctors.\u201d Another wrote, \u201cThe web-based stuff can point you toward information, but to get solid, in-depth knowledge you need to access a medical library, in my opinion. The problem: Medical libraries are few and far between for most people.\u201d<\/p>\n\n Just 4% of e-patients with chronic conditions say they or someone they know has been seriously harmed by following the advice or information they found online, which is about the same percentage of e-patients with no chronic conditions who agree. Forty percent of e-patients with chronic conditions say they or someone they know has been significantly helped by following medical advice or health information found on the internet. By comparison, 29% of e-patients with no chronic conditions say they or someone they know has been significantly helped by online health information.<\/p>\n\n ACOR members were asked to share a particular incident or story from their own experiences that makes an important point about online health resources. Here are a few of the stories:<\/p>\n\n These stories echo what other researchers and observers have found: The internet can help people engage with health care in new, unexpected, and important ways. A person with diabetes might learn to control their diet through the help of an online guide.[14. See \u201cCalorieKing And Joslin Diabetes Center Team Up to Promote Diabetes Prevention and Management Through Healthy Food Choices\u201d (Joslin Diabetes Center: July 31, 2007). Available at: http:\/\/www.joslin.org\/1083_4103.asp<\/a>] A doctor might use a site like Isabel Health Care to diagnosis a rare form of leukemia or an unexpected complication.[15. \u201cWhy Doctors So Often Get It Wrong,\u201d by David Leonhardt (New York Times<\/em>: Feb. 22, 2006). \u201cFor doctors, diagnosing gets a technological boost,\u201d by Erin Donaghue (USA Today<\/em>: Sept. 6, 2007). See also: http:\/\/www.isabelhealthcare.com<\/a>] \u201cOffline\u201d family and friends can join \u201conline\u201d friends in an integrated support group for people with hearing loss.[16. \u201cBeyond Hearing: Where Real-World and Online Support Meet,\u201d by Jonathan N. Cummings, Lee Sproull, and Sara B. Kiesler. (Group Dynamics: Theory, Research, and Practice<\/em>, 2002, Vol. 6, No. 1, 78-88).] Epilepsy patients can band together to create an information resource that guards against misinformation.[17. \u201cLearning from e-patients at Massachusetts General Hospital,\u201d by John Lester, Stephanie Prady, Yolanda Finegan, and Dan Hoch. (British Medical Journal<\/em>: May 15, 2004). Available at: http:\/\/www.bmj.com\/cgi\/content\/full\/328\/7449\/1188<\/a>]<\/p>","protected":false},"excerpt":{"rendered":" E-patients with chronic conditions are likely to be searching for answers to their own health questions. 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\n
Most e-patients visit two or more sites during a typical online health inquiry.<\/h3>\n\n
\n
Half of e-patients with chronic conditions later talked to a doctor about what they found online.<\/h3>\n\n
\n
E-patients with chronic conditions are likely to use their online health research to aid care decisions, ask new questions of their doctors, and manage chronic conditions.<\/h3>\n\n
\n
\n
E-patients with chronic conditions are likely to report strong feelings, both positive and negative, about their online health inquiries.<\/h3>\n\n
\n
\n
Most e-patients with chronic conditions do not consistently check the source and date of the health information they find online.<\/h3>\n\n
\n
E-patients with chronic conditions are particularly tuned in to the benefits of following medical advice or health information found on the internet.<\/h3>\n\n
\n