Consumers are taking increasing responsibility for their own health and health care. To make good decisions, consumers need health information that is easy to find and accurate. The Internet is one medium for obtaining health information that people in the United States are using increasingly often. But how accurate is health information on the Internet? How accessible is it, and to whom? And how are consumers using this information?
- The amount of health information on the Internet has exploded and continues to increase. Researchers estimate that there are more than 100,000 health-related Web sites on the Internet.
- The United States is online. As of September 2001, 143 million Americans - about 54 percent of the population - were using the Internet. An additional 2 million log on every month. (2)
- Although gaps still exist, Internet use in the United States is increasing regardless of income, education, age, race, ethnicity or gender. Internet use rose among blacks at an annual rate of 33 percent between August 2000 and September 2001, and among Hispanics by 30 percent. Use also increased among whites and Asian American and Pacific Islanders by about 20 percent. (2)
- Despite early differences in Internet use between men and women, gender equity has been a reality in Internet use since August 2000. Rates of use are now almost identical - 53.8 percent of women and 53.9 percent of men are online. Annual rates of increase in use are also almost the same - 20 percent for women and 19 percent for men. (2)
- Finding health information on the Internet is an age-related activity. More children (65 percent of those aged 10-13) and teenagers (75 percent of those aged 14-17) use the Internet than other age groups. (2) But health information seekers tend to be ages 30-64. (3)
- Accessing health information is a frequent online activity. Sixty-one percent of Internet users have used it to find health information - higher than the number who used it to shop, get stock quotes or check sports scores. (3)
- Seeking and finding health information online changes the way people look for information. Fifty-five percent of people who have used the Internet to get health information say it improves the way they get that information. (3)
- Finding health information on the Internet affects how people manage their health. Almost half (48 percent) of users who have gone online for health information say it improved the way they take care of themselves. (3)
- Sixty percent of primary care patients who had used the Internet to access health information reported in a recent survey that the information they found was the "same as" or "better than" the information they got from their doctors. Also, 59 percent said they did not share what they found with their physicians. (4)
- Internet use, though increasing, is not universal. Access may be limited for people with special health information needs. Individuals with disabilities such as blindness, deafness and typing difficulty are less likely to use the Internet. (2)
Interview:
Who's Surfing: Profile of the Online Health Consumer
Tom Ferguson, M.D., is senior research fellow for Online Health, the Pew Internet and American Life Project. He is also project director of the "Dragging Healthcare, Kicking & Screaming, Into the Information Age: A Guide for Grantmakers" project, funded by the Robert Wood Johnson Foundation, and adjunct associate professor at the School of Health Information Sciences, University of Texas, Houston. In addition, he is editor and publisher of The Ferguson Report: The Newsletter of Online Health, which is available free at www.fergusonreport.com.
Q. Who uses the Internet to get health information?
A. In a recent Pew Internet & American Life survey, we found that roughly 69 million Americans, which comprises 61 percent of those with Internet access, had used the World Wide Web to find health or medical information. We have identified these Internet users as e-patients - a majority of them go online at least once a month in search of health information. Sixty-three percent of e-patients are women and there are some striking differences in how and why men and women use the Internet to get health information.
Women are more likely than men to be seeking information related to a specific illness or condition and to be looking for information about specific symptoms. They are also more likely to be on the Internet looking for health information after a visit to the doctor. Although men and women are equally likely to seek information on behalf of a parent or other adult relative, women are twice as likely to seek information for a child.
E-patients tend to be middle-aged rather than very young or very old. And e-patients are likely to be experienced Internet users - more than half (59 percent) of users with three years of Internet experience have sought medical information, but only 47 percent of users who first went online in the past six months have. One of our more striking findings was that race, ethnicity and income are unrelated to the likelihood that an individual will seek health information on the Internet.
Q. What kind of information are people seeking?
A. By far the majority (91 percent) of health seekers are looking for information pertaining to a physical illness. Only about a quarter (26 percent) of health seekers said that they have looked for mental health information and only 13 percent have looked for information on fitness and nutrition. Ten percent of health seekers received advice from an online doctor; 9 percent participated in an online support group. (3)
Q. What are e-patients' biggest concerns about using the Internet as a source of health information?
A. Some e-patients worry that the sites they visit may sell or give away information about their online activities. They are also concerned that the health sites they visit may track or profile their online activities: Seventy-five percent of health seekers think that Internet companies specializing in health or medical information should not be permitted to track the online activities of visitors to their sites. The other big concern of health seekers is the quality of the information they are accessing.
Eighty-six percent report that they are concerned about getting online health information from an unreliable source. Fifty-eight percent say that they checked to see who is providing the information at sites they visited for health information the last time they went online. (3) Yet none of these appears to be a major hindrance; only 6 percent said that they last time they searched, they were unable to find the information they were looking for.
Q. How does Internet health information change consumers' health practices?
A. Results from our latest Pew Internet Health survey indicate that 48 percent of all Internet users who have gone online for medical information say that the advice they found on Web has improved the way they take of themselves. Forty-seven percent of those who sought information on their own illness said that the materials they found affected their decisions about medical treatments and care.
We also asked a subset of health seekers - those who made decisions based on what they read the last time they were online - how the Internet had affected them. Fifty percent of these people said that the information they found led them to ask new questions of their physician or to get a second opinion. This suggests that online health information has potent effects on individuals' health behaviors and health decisions. (3)
Q. From the perspective of consumers, how does the Internet differ from other sources of health information?
A. It's more convenient, it provides more information than other sources and e-patients can search anonymously without having to speak with anyone. (3) These are tremendous advantages for time-pressed individuals who are balancing multiple demands and schedules and for those with pressing health concerns that they don't yet feel comfortable bringing up face-to-face.
Q. Why do you think consumers are seeking health information on the Internet in such large and increasing numbers?
A. I see this as a part of a larger trend in which consumers are becoming increasingly empowered to take more responsibility for their own health. Some surveys (5) indicate that many Americans are not satisfied with the time they have with their doctors during typical visits. Patients also may be dissatisfied with the availability of their practitioners and with limited accessibility to information from their caregivers. So the increasing use of the Internet as a source of health information may be an indication both of consumers' willingness to take greater responsibility in their own health care decision-making as well as an indication of some dissatisfaction with the professional services available.
Q. How do you think a typical physician responds to patients who bring in information they found online?
A. Many doctors still have a pretty difficult time with this. But that doesn't seem to be slowing the trend. More adults in the United States consult the Internet for health information every day than go to doctors. Most doctors practicing today were trained in "Industrial Age Medicine" in which they were the only pathway through which medical science was delivered to patients.
We are making the transition to a different way of operating now, to what I've come to think of as an "Information Age Health Care" paradigm. We physicians are now providing care to patients who are empowered, well-informed and Internet-savvy. And I think this will lead to some very positive changes - both for physicians and for consumers.
Q. What do you see as the next big advance in health information on the Internet?
A. Our research leads us to expect several important Internet-driven changes in the coming years - doctor-patient e-mail could make many clinical visits unnecessary. And the providers who are first to offer effective online patient services may take patients away from those who don't. We believe that today's patient-driven online support networks that exist will develop into even more robust and capable online systems for e-patients with a specific disorder. And e-patients will direct and control more and more of their own medical care.
Physicians who continue to believe that their patients are not capable of tapping the information-rich resources of the Internet are likely to find their 'Net-savvy patients seeking medical care from other doctors. On the other hand, those wise and caring physicians who realize that they can learn from their patients who use the Internet, and who act on this realization, should do very well indeed.
The 'Other' Media and the Internet
As use of the Internet as a source of health information increases, the role played by other more "traditional" media in providing useful information to consumers can be overlooked. But a recent survey conducted by Princeton Survey Research Associates for the Kaiser Family Foundation indicates that television is considered by half (51 percent) of respondents to be their most important source of health news and information, followed by newspapers (21 percent). Four percent of respondents identified the Internet as their most important source of news and information about health. (12)
Other surveys of Internet users have found that fewer than one-third (29 percent) say they trust Web sites that sell products or services, and only slightly more (33 percent) say they trust Web sites that provide advice about buying products or services. In contrast, more than half (58 percent) say they trust newspapers and television news. (13)
How has this combination of the increasing availability of health information on the Internet and greater trust in other sources of information changed the role of other media?
Craig Stoltz, editor of the Health section of the Washington Post, says, "We try to alert people to Web-based resources that can deliver things paper can't - interactive assessment tools, tailored archives, special interest sites, etc. We understand that people making health care decisions are consulting the Internet and we try to help them do it wisely."
Stoltz sees the primary responsibility of his section as standing "between our readers and the universe of information regarding personal health that surrounds them. Much of that information is distorted by commercial, professional or ideological self-interest; our role is to drill down the bedrock of fact or science upon which a health-related product or service is based.
"The Internet," he adds, "is another source of information which carries the commercial, professional and ideological biases we try to penetrate."
Something for Everyone: Breaking Down Barriers to Information Access
Shoshanna Sofaer, Dr.P.H., is Robert P. Luciano Professor of Health Care Policy at the Baruch College School of Public Affairs in New York. She recently served as executive director for the Task Force on the Future of Medicare of the Century Foundation. She is a member of the Board on Health Care Services of the Institute of Medicine. Dr. Sofaer's research interests include providing information to individual consumers on the performance of the health care system and assessing the impact of information on both consumers and the system. She has also extensively studied the conditions and resources that help consumers and patients take informed steps to improve their own health.
Q. Is accessibility to health information on the Internet still a concern?
A. Accessibility has two major components. The first is very basic - accessibility depends on having a computer and a way to connect to the Internet. The second is more complicated and has to do with people knowing how to surf the Web to find the information they want and need.
The first type of accessibility problem has been a major concern for some time, but the "digital divide" appears to be closing as rates of Internet use grow for people across education and income levels. The second type of accessibility problem, which could be termed "navigability," is a serious problem that warrants far more attention than it has received. This problem involves both the individual's ability to handle the trial and error activity that searching the Internet often requires, and Web design issues. Web sites differ significantly in how easy it is to get to the information they offer; if it's too frustrating or complicated, if information seekers get sent down too many blind alleys or into too many cul-de-sacs, they'll quit. Novice information seekers may also need help in understanding differences that seem intuitively obvious to Web designers or Web-savvy individuals. These include things such as differences between a Web site and a portal, or what "information space" a specific search engine is actually searching. What the Web does not have available right now are sites that help people learn how to access information effectively and efficiently.
Q. How can these navigability problems be solved?
A. More attention and effort should be invested in teaching information seekers on the Web how to most efficiently access the information they want, and assisting them as they learn what information-searching methods work best for them. Searching for information involves some fairly sophisticated cognitive skills - finding information on the Internet is not second nature for most people. Portals, such as government sites that provide access to multiple sources of health information, should begin with a tutorial on "how to make this Web site work." Far more attention should be paid to navigability and "ease of use" issues by content providers and Web designers. From the perspective of consumers themselves, what seems to be most helpful now is guidance from peers - informal support and tutorials on what works and what doesn't in finding useful, reliable information.
I work with older Americans, and in a recent guide to Medicare options, I mentioned the Medicare Web site, which has loads of information. I suggested that if someone was having trouble with the Web, they contact their nearest grandchild for help. In testing the guide with potential users, they liked this suggestion a lot.
Q. What are some of the other barriers that keep people from finding health information on the Internet?
A. Significant barriers include the relatively high levels of language used on most Internet health sites, which make these sites inaccessible to individuals with basic literacy skills. Low levels of health literacy can also be a barrier. Other stumbling blocks include the lack of materials in languages other than English and, perhaps somewhat surprisingly, color.
Many sites are designed using color combinations that are difficult or impossible for some people, including colorblind individuals, to read. There is a science of readability that can be usefully applied to help make the information on sites more accessible. It is also difficult for individuals with some types of disabilities to use the Internet, although all government-sponsored sites have to comply with the Americans with Disabilities Act.
Q. What are some of the benefits of the availability of health information on the Internet?
A. There is really quite an extraordinary benefit in the sheer amount of information that is now available to consumers. In addition, there is a set of potential psychological benefits to being able to access information online. It makes people feel like they are a little bit more in charge. They also discover that other people are experiencing the same things they are experiencing - that other people have been through what they are going through and are thinking about what they are thinking about. This can be a tremendous boost. In general, having access to information and knowing that others have been there before can be enabling for people who want to be more involved in improving and maintaining their own health.
Q. The amount of information available may seem like an obstacle for some. What are the effects of information overload?
A. One consequence is that people will become frustrated and use the information that is the easiest to find, but this may or may not be the most accurate information available. There are severe limits on how much information individuals can absorb, especially if the information is unfamiliar or highly technical. But there are also strategies individuals can use to help find good information in amounts and at a pace that are useful to them. Seeking information from sources that are known to be trustworthy is a good step in this direction. Taking the information back to a physician or other clinician is another way to help make sense of what is found - to help make a bridge to the consumer's circumstances and experiences.
Q. You mention finding "good information." What steps can consumers take to make sure that the information they find is accurate and reliable?
A. The first step is to look at the source of the information. This is critical. Does the information come from a source that has a reputation as an independent, trustworthy purveyor of information on or off the Internet? Is the agenda of the site simply to inform, or is an effort being made to sell something? This is another area in which consultation with personal clinicians can be useful - what do they think of the credibility and reliability of the information?
Q. Any suggestions for helping consumers use the information they find?
A. Finding good health information and applying it effectively to one's life and circumstances is a lot like good detective work. It requires persistence, ingenuity and being able to think about information from multiple angles. It also requires being able to move between abstract thinking and concrete thinking. It takes practice, and often some guidance and help, for most people to become skilled at this. Helping consumers make good use of the information they find is an area in which physicians have a critically important role to play. Physicians not only understand how health information is generated through research and generalized clinical experience, but ideally they will also know their patients' specific circumstances and needs. But some physicians are not all that Web-savvy themselves, or may be threatened by having to deal with information from the Web. The government or an independent group can also help by recommending trustworthy sites.
Q. What role does information play in helping consumers make good health decisions?
A. Information is necessary and important, but it's not sufficient for helping people making good decisions and engaging actively in their own health. The information itself is a relatively small piece of the pie. Also needed are technical support, social and emotional support and information processing support. The Internet has taken big steps in the right direction in terms of providing accurate and reliable health information, but possibilities and challenges still exist in terms of using the Internet to provide the types of support necessary to help people use information well.
The Importance of Health Literacy and Internet Usability
As more Americans overcome practical barriers to Internet access, questions of improving the functional accessibility of the health information available online loom large. Recent research suggests that accessibility and readability are significant barriers to using the voluminous health information on the Internet. (9) The researchers found specifically that accessing health information was not an efficient process - fewer than one-quarter of search engines' first pages of links led to relevant content. In addition, all of the English-language sites surveyed and 86 percent of Spanish-language Web sites surveyed required reading ability at high school level or higher.
This means that the sites were functionally inaccessible to individuals with poor health literacy skills. Health literacy has been defined as "the set of skills needed to read, understand, and act on basic health care information." Although health literacy has not been directly studied in the U.S. population, estimates of health literacy have been drawn from the National Adult Literacy Survey. These estimates indicate that more than 90 million adults may have low health literacy skills, including the limited ability to read and understand health educational materials. (10)
Improving accessibility means improving not only the presentation and content of health information, but also ease of use. Research with underserved Internet users indicates that their priorities for Internet content and use include:
- practical information focusing on the local community
- information at basic literacy levels
- content for non-English speakers, including online translation tools, online instructional materials and information in native languages
- easier searching, coaching and involvement. (11)
More information about health literacy is available from the National Institute for Literacy (www.nifl.gov), a federal organization that "supports the development of high-quality literacy services so all Americans can develop essential basic skills."
'Cyberchondriacs' Growing in Number
A recent Harris Poll (14) indicates that the number of people who are using the Internet to find health-related information is climbing. An estimated 110 million adults sometimes go online to find information about health care, earning the title of "cyberchondriac" from Harris Interactive. That number has been steadily rising since 1998, when 54 million Americans were online health-information seekers. Last year's poll indicated that 97 million Internet users looked for health care information online.
Harris polled 707 adult Internet users and found that 18 percent "often" go online for health-related information, and another 35 percent "sometimes" do. Respondents were classified as cyberchondriacs even if they "hardly ever" accessed the Internet for health information, as 27 percent said in the recent poll. However, on average, the cyberchondriacs referenced by Harris used the Internet three times a month to find health-related information.
Accuracy and Quality: Evaluating Information on the Internet
Concerns about the accuracy and quality of health information on the Internet have led to a variety of activities to address these issues.
From the perspective of the Internet "health industry," one critical activity now under way is the development and implementation of standards for Web sites that provide health information and other health-care related Web activities.
Some activities in this arena are being undertaken on an international basis (e.g., Health on the Net, www.hon.ch, a not-for-profit organization founded in Geneva in 1995). In the United States, one of the best-known efforts to develop standards in the areas of privacy, security, credibility and reliability has been undertaken by Hi-Ethics Inc., www.hiethics.com. Hi-Ethics is a not-for-profit consortium of U.S.-based commercial health Internet companies that has developed a set of 14 principles that address issues such as disclosure of ownership and financial sponsorship, safeguarding privacy and quality of content. Hi-Ethics relies on a third party, the URAC Health Web Site Accreditation Program, to demonstrate the adherence of health Web sites to standards based on these 14 principles. (1)
Organizations such as the American Medical Association have also developed and published guidelines for medical and health information sites. (6)
From the perspective of consumers, the federal government and other third parties are undertaking efforts to educate consumers in how to seek and use health information.
For example, the Agency for Healthcare Research and Quality, in partnership with the Kanter Family Foundation, has published information for consumers to help them evaluate the quality and accuracy of the health information they obtain from a variety of sources, including books, newspapers, magazines, television, radio and the Internet. Written in easily understandable language, Now You Have a Diagnosis: What's Next: Using Health Care Information to Help Make Treatment Decisions provides guidance and resources for health information seekers who are just beginning their searches for information. In addition to providing basic guidelines for finding good information, the booklet defines and describes types of health care research and how the results of research can be used to improve individuals' health. (7)
The National Cancer Institute has also recently released a fact sheet to help consumers evaluate the accuracy and quality of health information - in this case, information specifically found on the Internet. Presented in question-and-answer format with a summary of key points, the fact sheet provides guidance about issues such as how to determine the source of information provided and how to determine what the site will do with personal information gathered from users. (8)
Links to Non-Commercial Health Information Web Sites
Agency for Healthcare Research and Quality
Information for Consumers & Patients
Health Behavior News Service
Summary of daily news on health and behavior
or
Stories on health behavior research
Rollins School of Public Health
Emory University
Public health information links
Department of Health and Human Services
healthfinder®: guide to reliable health information
FirstGov for Consumers
Consumer.gov: information from the federal government
National Institutes of Health
Consumer Health Publications
National Library of Medicine
MEDLINEplus Health Information
The Research
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The Center for the Advancement of Health is an independent nonprofit organization that
promotes greater recognition of how psychological, social, behavioral, economic and
environmental factors influence health and illness. The Center advocates the highest
quality research and communicates it to the medical community and the public. The
fundamental aim of the Center is to translate into policy and practice the growing body of
evidence that can lead to the improvement and maintenance of the health of individuals and
the public. The Center was founded by the John D. and Catherine T. MacArthur Foundation
and the Nathan Cummings Foundation, which continue to provide core funding. Funding for
this series was provided by the Robert Wood Johnson Foundation.
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