chapter 8
ONLINE HEALTH RESOURCES

Prior to the Internet, finding the latest information on a health issue typically required access to a university or medical library and specialized knowledge of the subject. Most medical studies and information existed in expensive books and journals, which were generally written for those with formal training. The Internet gave rise to a plethora of accessible, informative Web sites that average consumers could comprehend. The rise of online pharmacies also allowed people the convenience of ordering and receiving prescription drugs from home. However, these conveniences have come with their share of problems. Online pharmacies that sell counterfeit medications run rampant on the Internet as of 2005, and some Americans rely on self-diagnosis when they should be consulting a medical professional. Overall, however, Americans' experiences with online health care information have been positive. According to Susannah Fox and Deborah Fallows in Internet Health Resources (Washington, DC: Pew Internet & American Life Project, July 2003), roughly eight out of ten online Americans who searched for health information found what they were looking for at least most of the time in 2002. Eighty to ninety percent of people who sought health resources on the Web appreciated the convenience, the breadth of information, and the anonymity of online medical sources.

The Internet has benefited those who work in health-care fields as well. The Internet allows medical researchers to share information as never before. Enormous databases accessible on the Internet contain references to nearly all published medical papers, sparing researchers the misery of hunting through print indexes. The Internet also provides the perfect medium for posting health-care research data, such as statistics on disease prevalence, and research organizations have posted data from thousands of disease studies. The availability of the research data has fostered a new era of scientific cooperation wherein medical results from labs halfway around the world can be brought together with a click of a mouse.

HEALTH CARE ON THE INTERNET

According to the Pew/Internet study Internet Health Resources, 80% of adult American Internet users (ninety-three million people) had gone online at least once to reference medical and health information as of late 2002. This represented close to half of the adult American population in 2002 and made searching for health care the second most popular online activity (next to e-mailing). In addition, the number of people engaged in this activity was growing at a rapid rate. In a previous Pew/Internet study, The Online Health Care Revolution (Washington, DC: Pew Internet & American Life Project, November 2000), Susannah Fox and Lee Rainie estimated that only 55% of adult Internet users (fifty million people) had researched a medical or health-related topic at that time.

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

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

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

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

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.

MEDICATION ONLINE

Since the late 1990s, the online pharmacy business has been growing at a steady rate. Most major online pharmacies, such as drugstore.com and Wal-Mart's online pharmacy, are legitimate. They carry the Verified Internet Pharmacy Practice Sites (VIPPS) seal of approval (issued by the National Association of Boards of Pharmacy), meaning they comply with all state and federal laws. Much like traditional pharmacies, these online drug stores require that a prescription be faxed or called in by a doctor. Such pharmacies also send the drug to the patient complete with dosage and warning information on the bottle. However, illegitimate virtual pharmacies, which do not follow U.S. state and federal regulations, have begun operating on the Internet as well. Some of these pharmacies are based in the United States and some operate on foreign soil.

The lure of illegal pharmacies is low cost and convenience. Many illegitimate pharmacies will send patients prescription drugs without a prescription. Pharmacy Web sites located in other countries typically sell their drugs for much less than U.S. pharmacies as well. Many foreign pharmacies that cater to the U.S. market are located in Canada. Clifford Krauss reported in "Internet Drug Exporters Feel Pressure in Canada" (New York Times, December 11, 2004) that the 270 online Canadian pharmacies made more than $800 million from U.S. customers in 2003. While many of the Canadian pharmacies follow the same strict standards as American pharmacies, it is illegal for individuals in the United States to buy pharmaceuticals from foreign countries.

Illegitimate online pharmacies have generated a great deal of concern among health-care professionals and government lawmakers in the United States. One problem is that state medical boards, who typically oversee brick- and-mortar operations, have difficulty monitoring pharmaceutical Web sites. While some of these pharmacies follow many of the same standards as legitimate operations, others disregard them altogether. In addition to providing drugs without a prescription, many send patients drugs without warnings or dosage information. Such a practice is exceedingly dangerous. Accutane, an acne treatment medication, has been known to cause severe birth defects and mental problems in select patients. If a

TABLE 8.5

pregnant woman were to receive an unlabeled bottle of Accutane and did not know of the warnings, the results could be disastrous. Another concern is that many of these sites have been known to deal in counterfeit drugs with diluted ingredients or no ingredients at all. Counterfeit heart medication or even cholesterol medication could result in a patient's death. When federal and state agencies become aware of one of these illegitimate pharmacies in the United States, they attempt to shut it down. However, government regulators can do very little about controlling pharmacies outside of U.S. borders.

In the first six months of 2004 the United States General Accounting Office (GAO) conducted a study of Internet pharmacies. The investigators placed up to ten orders for each of thirteen different drugs from online pharmacies located in the United States, Canada, and other foreign countries, including Argentina, Costa Rica, Fiji, India, Mexico, Pakistan, and Turkey. (See Table 8.5.) When the GAO received the drugs they forwarded them to drug manufacturers for chemical verification. The results were reported in Internet Pharmacies: Some Pose Safety Risks for Consumers, which was published in June 2004 by the GAO. As Table 8.6 shows, all the Canadian Internet pharmacies required prescriptions from a patient's physician.

TABLE 8.6

Only five U.S. Internet pharmacies followed this convention. The other twenty-four sent out prescriptions based on questionnaires that inquired about a patient's history—a practice condemned by the Food and Drug Administration (FDA), the American Medical Association (AMA), and many state medical boards. Most of the foreign Internet pharmacies outside of Canada did not even require a questionnaire.

Some of the sites, particularly in Canada and the United States, followed every rule that brick-and-mortar pharmacies did in the United States. In one case, a U.S. pharmacy refused to send the investigators a prescription for Accutane since the doctor who wrote the prescription was not on an official list of doctors qualified to do so. Table 8.7 lists some of the problems encountered with the sixty-eight online pharmacies that did send drug samples to the GAO investigators. For the most part, the samples that were sent from U.S. online pharmacies had only a few problems, including improper labeling. Many Canadian pharmacies sent versions of popular U.S. drugs that were not licensed for sale in the United States. Much like generic medications, these drugs have the same medicinal ingredients as their U.S. equivalents and pose no additional threat to those taking them.

Drugs sent from foreign countries other than Canada were riddled with problems. Five foreign pharmacies took the investigators' money and sent them no drugs. Of the drugs received from these other foreign countries, none of them had an instruction label and only six out of twenty-one had warning labels. Some of these drugs, particularly narcotics, were packaged in strange ways to disguise the contents of the package. The supposed shipment of Oxy-Contin arrived in a used CD case wrapped in brown packing tape. Several of the foreign drugs were counterfeit as well, including the OxyContin, which did not contain any of the actual drug. When the GAO investigators attempted to track down the origin of the foreign packages, they came up with some bizarre locations. A sample of Lipitor from Argentina was apparently shipped from a shopping

TABLE 8.7

mall in Buenos Aires. An order of Humulin N and Zoloft were traced to private residences in Lahore, Pakistan.

Who Is Ordering Online Medications?

Though the number of people purchasing drugs online has grown since the turn of the century, the overall percentage of Americans buying pharmaceuticals on the Internet was still fairly low as of mid-2004. According to Susannah Fox in Prescription Drugs Online (Washington, DC: Pew Internet & American Life Project, October 2004), only 5% of American adults (ten million people) had bought prescription drugs online for themselves or others by spring 2004, compared with the 64% (129 million people) of American adults who took prescription drugs on a regular basis or lived with someone who did. Predictably, most people who bought online drugs said that convenience and savings were the two biggest reasons they bought drugs online. Roughly 75% of people who made an online drug purchase bought a drug for a chronic medical condition such as high blood pressure. The rest said they went online to purchase a drug for other purposes such as weight loss or sexual performance.

The vast majority of people surveyed in the Pew/Internet report who bought online drugs said they had a prescription from a doctor. Almost all of these people received their prescription drug from an online pharmacy based in the United States. Only a few people replied that they found their online pharmacy by responding to a spam e-mail advertisement. In the end, most people who went online for their drugs were happy with their experience. Roughly 90% of those who purchased online pharmaceuticals said they planned to do it again. The biggest complaint people had was that their packages were lost in the mail. Given these positive experiences, one would expect that more people would fill their prescriptions online. Even with all the reputable online pharmacy Web sites, a full 62% of Americans surveyed still believed that purchasing prescription drugs online was more dangerous than buying them at a local pharmacy. Only 20% felt online purchases were as safe.

THE MEDICAL DATA REVOLUTION

Since the 1980s, information technologies and the Internet have transformed the field of medical research. Before launching a medical research project, a scientist first must know what has been done in the area he or she plans to study. The initial step, for instance, for a researcher who wants to find a cure for Alzheimer's would be to analyze previous data on the subject. Only then could the researcher formulate new theories and design experiments that advance the field. Before the Internet and the widespread use of computer databases, researchers seeking such information were required to spend days at medical libraries, sifting through thick journal indexes that cataloged thousands upon thousands of past journal articles by subject. The advent of computer databases changed all that. Huge medical indexes were put in digital form, which allowed researchers to compile afull list of research articles in minutes instead of days. As of late 2004 a number of databases existed online. Medline/PubMed, which is maintained by the National Library of Medicine, is one of the most comprehensive and widely used of these databases. In 2004 PubMed contained citations and abstracts summarizing papers published in nearly 4,800 biomedical journals in the United States and seventy other countries. By simply going online to PubMed and typing a query, a researcher can track down every published paper on most medical topics.

The ability of computers and the Internet to store and transmit scientific data also has transformed the way medical research is conducted. The Internet allows scientists from all over the world to share data on diseases and patient attributes. Computers can then perform statistical analysis on disease data in relation to various aspects of patient histories, such as age, geographic location, and even the presence of other diseases.

The Centers for Disease Control's National Center for Health Statistics (NCHS) database contains statistics on a variety of diseases including arthritis, heart disease, HIV, and even tooth decay. All this information is freely available for scientists to use in their research. In 1999, for example, West Virginia University and scientists with the CDC combined data from the NCHS and the U.S. Census to build a U.S. atlas showing heart disease in women by location, age, race, and income. Among other things, the atlas confirmed earlier studies that revealed that women in poorer communities had higher levels of heart disease than their counterparts in affluent communities. The atlas also provided a reference resource for government officials and health-care workers, letting them know exactly where their time and money should be spent on heart disease awareness programs. The State Center for Health Statistics in North Carolina employed CDC data to determine the mortality and life expectancies of its residents. The resulting January 2002 study—entitled "Healthy Life Expectancy in North Carolina, 1996–2000," by Paul Buescher and Ziya Gizlice—determined that the life span of the average North Carolinian was 75.6 years. They also calculated that the average person would likely spend some 12.6 years toward the end of life in poor to fair health. Using such a study, the state could forecast how

TABLE 8.8

much money would be required to support the state's elderly population far into the future.

Computer databases and the Internet have also become invaluable resources for organ and tissue donor programs. Treatments for cancers such as leukemia sometimes destroy the bone marrow that produces red blood cells, white blood cells, and platelets in the blood stream. To replace the bone marrow, a transplant from another person is needed. Finding compatible bone marrow, however, is very difficult. Typically, a match will not even exist within the same family. The National Bone Marrow Donor Registry is a computer database of people who have agreed to donate their bone marrow to those in need. A doctor with a patient in need of a transplant can simply log onto the registry via the Internet and pull up all possible matches in the country. The Organ Procurement and Transplantation Network (OPTN) maintains a similar database for internal organ transplants, including kidney, pancreas, heart, lung, and intestine. OPTN's secure transplant information database keeps track of exactly which patients are in need of a transplant. Table 8.8 displays the list of candidates who were waiting on the OPTN on January 17, 2005. All necessary forms and patient histories are also included in the database. Should a donor's heart become available in a medical facility anywhere in the United States, the attending physician can access the database to find patients who are waiting for a new heart.