Most of the people who go online for health information, however, do it infrequently. Some 80% of people who conducted health searches in or before 2002 said that they performed such a search every few months or less. Only 6% of health seekers reported going online in a typical day. Over half (57%) of all people turning to the Internet for medical advice said they went looking on behalf of someone else, such as a relative, a spouse, or a friend. Roughly half of all online Americans (54%) visited a Web site that provided information or support for people interested in a specific disease.
The July 2003 Pew/Internet report found that fewer online men (75%) surfed the Web for health and medical information than online woman (85%). (See Figure 8.1.) Elderly Americans sought out health advice less than those under sixty-five years of age. In fact, 80% of Web users eighteen to sixty-four had searched for medical knowledge online, as opposed to 70% of seniors sixty-five and older. This age discrepancy did not have as much to do with disease prevalence in the two groups as it did with the fact that many seniors were not online in 2002. As the general population ages, the percentage of online health seeking seniors should grow. Not surprisingly, online
FIGURE 8.1
Americans with higher incomes and education levels also searched for health information more than those with less education and income. The only discrepancies within racial groups could be attributed to the differences in income and education levels among those groups. Finally, Internet users with high-speed connections searched for medical information more than those without. A full 89% of Americans with broadband connections reported looking for health information on the Internet.
The Types of Health-Related Searches Made by Americans
Table 8.1, which appears in Internet Health Resources, lists the types of health-care searches Americans engaged
TABLE 8.1
| Health topics researched online, 2002 | |
| Health topic | Internet users who have searched for info on it (%) |
| SOURCE: Susannah Fax and Deborah Fallows, "Health Topics Searched Online," in Internet Health Resources, Pew Internet and American Life Project, July 16, 2004, http://www.pewinternet.org/pdfs/PIP_Health_Report_July_2003.pdf (accessed December 11, 2004).Used by permission of the Pew Internet and American Life Project, which bears no responsibility for the interpretations presented or conclusions reached based on analysis of the data. | |
| Specific disease or medical problem | 63% |
| Certain medical treatment or procedure | 47 |
| Diet, nutrition, vitamins, or nutritional supplements | 44 |
| Exercise or fitness | 36 |
| Prescription or over-the-counter drugs | 34 |
| Alternative treatments or medicines | 28 |
| Health insurance | 25 |
| Depression, anxiety, stress, or mental health issues | 21 |
| A particular doctor or hospital | 21 |
| Experimental treatments or medicines | 18 |
| Environmental health hazards | 17 |
| Immunizations or vaccinations | 13 |
| Sexual health information | 10 |
| Medicare or Medicaid | 9 |
| Problems with drugs or alcohol | 8 |
| How to quit smoking | 6 |
in by topic in 2002. Sixty-three percent of Internet users searched for facts on a specific disease or medical problem. A much higher percentage of women (72%) than men (54%) reported searching for information on specific diseases and problems. Far fewer people searched for information on preventive health measures, such as diet, nutrition, and fitness. Forty-four percent of Internet users reported looking for information on diet and nutrition, and 36% said they surfed the Internet looking for fitness information. In January the number of people looking for diet and nutrition advice spiked as people aimed to fulfill their New Year's resolutions. A majority (51%) of Internet users aged eighteen to twenty-nine went online to view fitness information, compared with roughly one-third (35%) of those aged thirty to forty-nine. Health insurance, which has always been a big concern for American adults, ranks seventh, according to Table 8.1. A larger percentage of online parents (29%) researched health insurance topics than those without children (23%). Drugs, alcohol, and tobacco were the least popular topics mentioned.
The health of Internet users and the health of the people around them also influenced the type of health information they looked for on the Web. Disabled and chronically ill people as a group had the least Internet access. Pew/Internet research found that only 38% of disabled Americans typically went online in 2002. According to Internet Health Resources, of those disabled people who did go online, nearly 87% had surfed the Web for health information. Table 8.2 reveals the health topics that online disabled people searched for most. On the whole they researched the same topics as the general population, but at higher rates. Researching a specific disease or medical
TABLE 8.2
| Health topics researched online, by disability or chronic illness status of seeker, 2002 | ||
| Health topics | Non-disabled Internet users (%) | Those with disabilities (%) |
| N = 1,220. | ||
| SOURCE: Susannah Fax and Deborah Fallows, "Online Americans living with a chronic illness or disability are fervid health seekers," in Internet Health Resources, Pew Internet and American Life Project, July 16, 2004,http://www.pewinternet.org/pdfs/PIP_Health_Report_July_2003.pdf (accessed December 11, 2004). Used by permission of the Pew Internet and American Life Project, which bears no responsibility for the interpretations presented or conclusions reached based on analysis of the data. | ||
| Specific disease or medical problem | 61 | 85 |
| Certain medical treatment or procedure | 45 | 66 |
| Diet, nutrition, vitamins or nutritional supplements | 42 | 59 |
| Prescription or over-the-counter drugs | 31 | 55 |
| Alternative treatments or medicines | 26 | 48 |
| Depression, anxiety, stress, or mental health issues | 19 | 37 |
| Experimental treatments or medicines | 16 | 37 |
problem topped the disabled Internet users' list, with 85% claiming to have performed this activity. Looking for fitness information and for a particular doctor or hospital did not rank high among disabled Internet users. The online habits of the roughly one-tenth of Americans who lived with someone chronically ill or disabled also differed from the general Internet population. Those living with the chronically ill generally searched for practical information to help their loved ones. Sixty-two percent of caregivers on the Internet searched for a specific medical treatment or procedure, as opposed to 47% of the general online population. Over half (55%) of online caregivers used the Internet to find information on drugs, versus only a third of the Internet population (34%) as a whole. A higher percentage of caregivers also searched for material on mental health (37% vs. 21%) and looked into experimental treatments (35% vs. 18%).
The Impact of the Internet on Health Care Information
For the most part, Americans are positive about the health information available to them on the Web. According to Internet Health Resources, roughly 70% of online health-information seekers reported that the Internet has influenced medical decisions related to their own health or to that of someone close to them. Seventy-three percent said that the Internet has improved the health care they received. This number was up from 2001, according to Susannah Fox and Lee Rainie in Vital Decisions (Washington, DC: Pew Internet & American Life Project, May 2002), when only 61% of those seeking online medical advice believed the Internet improved their health care. Table 8.3 displays the percentage of people affected favorably by health Web sites. Forty-four percent thought that information gleaned from the Internet affected a decision on how to treat an illness, and 25% said the information
TABLE 8.3
| Impact of online health information, 2001 | |
| SUCCESSFUL SEARCHERS WHO SAY ONLINE HEALTH INFORMATION… | |
| % | |
| SOURCE: Susannah Fox and Lee Rainie, "Information's Impact," in Vital Decisions, PewInternet and American Life Project, May 22, 2002, http://www.pewinternet.org/pdfs/PIP_Vital_Decisions_May2002.pdf (accessed December 11, 2004). Used by permission of the Pew Internet and American Life Project, which bears no responsibility for the interpretations presented or conclusions reached based on analysis of the data. | |
| Affected a decision about how to treat an illness or condition | 44 |
| Led them to ask a doctor new questions or get a second opinion | 38 |
| Changed approach to maintaining own health or health of someone they care for | 34 |
| Changed the way they think about diet, exercise, and stress | 30 |
| Changed the way they cope with a chronic condition or manage pain | 25 |
| Affected a decision about whether to see a doctor or not | 17 |
changed the way they coped with pain. Fox and Rainie concluded that those typically in the most need obtained the greatest benefits from e-medicine. In fact, 51% of those surveyed who were treated for a serious illness said they or someone they knew benefited significantly from online Internet advice in the year prior to the 2001 Pew/Internet survey. Two percent of those who searched for health advice online said that they knew someone who was seriously harmed by following medical information gleaned from the Internet.
Many health-care officials worry that Americans use the Internet to diagnose their own ailments in the hope of avoiding time-consuming but necessary visits to the doctor's office. The biggest problem with self-diagnosis is that it is rarely objective. Using advice from online Web sites is especially problematic in that it is often incomplete. Gretchen K. Berland, Marc N. Elliott, and others affiliated with the California HealthCare Foundation and RAND Health undertook a study of medical Web sites on breast cancer, depression, obesity, and childhood asthma between January and December 2000. The team published their results in "Health Information on the Internet: Accessibility, Quality, and Readability in English and Spanish" (JAMA, May 23, 2001). According to the researchers, key medical information was missing from most Web sites: "On average, 45% of the clinical elements on English- and 22% on Spanish-language Web sites were more than minimally covered and completely accurate and 24% of the clinical elements on English- and 53% on Spanish-language Web sites were not covered at all. All English and 86% of Spanish Web sites required high school level or greater reading ability."
The Medical Library Association (MLA) has a list of recommendations that those seeking health information on the Internet should follow. These include identifying each site's sponsor, checking the date of information posted, and verifying that the material is factual, as opposed to
TABLE 8.4
| Factors deterring users from some health information Web sites, 2001 | |
| Health seekers | % |
| SOURCE: Susannah Fox and Lee Rainie, "Evaluating Information," in Vital Decisions, Pew Internet and American Life Project, May 22, 2002, http://www.pewinternet.org/pdfs/PIP_Vital_Decisions_May2002.pdf (accessed December 11, 2004). Used by permission of the Pew Internet and American Life Project, which bears no responsibility for the interpretations presented or conclusions reached based on analysis of the data. | |
| Site was too commercial | 47 |
| User couldn't determine the source of the information | 42 |
| User couldn't determine when information was last updated | 37 |
| Site lacked endorsement of a trusted independent organization | 30 |
| Site appeared sloppy or unprofessional | 29 |
| Site contained information you knew to be wrong | 26 |
| Information disagreed with own doctor's advice | 20 |
opinion. The California HealthCare Foundation warns that online Americans looking for health information should take their time searching for advice, visit at least four to six sites, and discuss what they find with a doctor before taking action. Most people surveyed for the May 2002 Pew/Internet study entitled Vital Decisions did not adhere to these guidelines. A majority of people only visited a few sites in their medical searches. Seventy-two percent of people looking for health information online uncritically accepted most of the health information they found. For the most part, online health-care seekers used the Web to confirm what they already thought they knew. Roughly 90% of health-conscious online Americans said that the information they found on their last online search generally supported their beliefs. Only 4% reported that the information differed from what they had read or heard before.
There were, however, a number of factors that did turn people away from medical information, which are displayed in Table 8.4. The biggest deterrent for people was commercialism. Generally, too many banners or popup ads caused people to lose confidence in a medical Web site. Some 42% of online health seekers did not trust information if they could not determine the source, and 37% were wary of information when they could not determine whether it had been recently updated. All in all, the report revealed that only one quarter of people surveyed follow the recommendations given by the MLA and the California HealthCare Foundation.
Despite Americans' abuse of e-medicine, the Pew/Internet study Internet Health Resources revealed that people who surfed the Web for health topics were also more likely to visit the doctor. Nearly 80% of Internet users interviewed for the report had been to the doctor in the year prior to the survey. Eighty-four percent of those who went to the doctor also said they searched for online health information. Only two-thirds (66%) of online survey respondents who did not see a doctor said they had gone online for health information. According to Vital Decisions, nearly
FIGURE 8.2
one-third of all successful Internet medical searches led to someone visiting their doctor. For the most part, people said that their health-care professionals were open to them bringing online material to a visit. A third (31%) of people in Vital Decisions who went to their doctor with Internet-based information said their doctor thought the material was "very interesting." Forty-eight percent said the doctor was "somewhat interested," and only 13% reported that the doctor simply dismissed the information.
Top Web Sites for Health Information
According to the MLA, the ten most useful medical Web sites as of November 2002 were (listed alphabetically):
- Cancer.gov, National Cancer Institute (www.cancer.gov)
- Centers for Disease Control and Prevention (www.cdc.gov)
- Familydoctor.org, American Academy of Family Physicians (familydoctor.org)
- Healthfinder, National Health Information Center (www.healthfinder.gov)
- HIV InSite, University of California, San Francisco Center for HIV Information (www.hivinsight.com)
- KidsHealth, Nemours Foundation (www.kidshealth.com)
- Mayo Clinic (www.mayoclinic.org)
- MEDEM, Inc.: Connecting Physicians and Patients Online (www.medem.com)
- MedlinePlus, National Library of Medicine (www.medlineplus.gov)
- NOAH: New York Online Access to Health (www.noah-healt.org)
These Web sites were evaluated in part on their credibility, content, sponsorship/authorship, purpose, and design. MedlinePlus made its debut on the Web in October 1998 with twenty-two health topics in its library. The site received 116,000 page hits in its first month. By late 2004 the site was getting over 120 million page hits every three months (see Figure 8.2), and contained information from the National Institutes of Health (the largest medical research institution in the world) as well as other top medical institutions. All in all, the site held information on more than 650 diseases and conditions. Content from the ADAM medical encyclopedia (www.adam.com) and Merriam-Webster's Medical Dictionary are integrated onto the site. Users of the site can also obtain current facts on most prescription and nonprescription drugs. The site displays no advertising, and all the information on MedlinePlus is reviewed by experts in the medical profession. A search on MedlinePlus for a disease typically yields definitions, fact sheets, drug information, the latest news on the disease, and links to places where further information could be found. Of all e-government Web sites included in the American Customer Satisfaction Index (ACSI), Medline-Plus received the highest rating (86 out of 100) in 2004.
Other general medicine Web sites noted by the MLA included healthfinder.gov, familydoctor.org, medem.com, noah-health.org, and mayoclinic.com. Like MedlinePlus, these sites contain information on numerous medical diseases and conditions. Not-for-profit kidshealth.org focuses on health care for children from prenatal care through adolescence. This Web site maintains separate areas for kids, teenagers, and parents, and as of late 2004, the site received more than 200,000 visitors a day.
Facts on HIV are available at hivinsight.com, and cancer.gov presents information on cancer types, causes, and treatments. Cancer.gov also maintains a database of clinical trials all over the country for those who seek information on alternative treatments. Finally, cdc.gov, operated by the Centers for Disease Control and Prevention (CDC), contains information on communicable diseases, immunization, and disease prevention.
E-mail and Health Care
E-mail has also proven useful for those seeking medical information and advice. E-mail provides a great way for Americans with health problems to commiserate with friends and family and to stay in touch with their doctors. The July 2003 Pew/Internet report Internet Health Resources revealed that 30% of adult American e-mail users (thirty-two million people) have at some time sent or received an e-mail regarding health care. Roughly 25% of e-mailers swap health related e-mails with friends and family members. Typically those who are caring for a sick loved one do not have the time or energy to call friends and family members to update them on the patient's condition. E-mail provides the perfect medium for many to transmit such news. E-mail also has proven beneficial when used in conjunction with support groups and counseling. According to Deborah Tate and her colleagues at Brown University, people who participated in Internet weight-loss programs were much more successful if they received e-mail counseling ("Effects of Internet Behavioral Counseling on Weight Loss in Adults at Risk for Type 2 Diabetes," JAMA, April 9, 2003). Of ninety-two adults enrolled in online weight-loss programs, those who communicated with their weight-loss counselors via e-mail lost 4.8% of their original body weight, which was double that lost by those without e-mail counseling.
E-mail is also useful for communicating with health-care professionals. Roughly 6% of people who use e-mail employed it to communicate with a doctor, according to Internet Health Resources. E-mail provides an easy way to make appointments or to renew prescriptions. E-mail also is ideal for those who have minor health problems to discuss such as an upper respiratory infection or a rash. Quite a few people surveyed for Internet Health Resources lived in rural areas far from their doctors' offices and found that e-mail helped to bridge the distance. E-mail allows a patient to relate symptoms to the doctor without having to play phone tag, and based on the e-mail, the doctor can either ask the patient to come in for a diagnosis or can simply give advice via e-mail reply. Disabled and chronically ill e-mail users relied on e-mail more than most to communicate with their doctors as many of them typically have trouble moving about. In fact, a full 19% of chronically ill and disabled people who use e-mail communicated with their doctor via e-mail at some time.
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