How Internet users decide what information to trust when they or their loved ones are sick

In November 2000, the Pew Internet & American Life Project reported that 52 million American adults relied on the Internet to make critical health decisions.  We now find that 73 million American adults use the Internet to research prescription drugs, explore new ways to control their weight, and prepare for doctor’s appointments, among other activities.  Many say the Internet has helped them or someone they know and very few report harmful effects from acting on bad information they found online.

However, there has been a drumbeat of warnings about the quality of online health information and there is cause for concern about whether consumers are finding the very best advice online. While others have looked at online content and charted its deficiencies, the Pew Internet Project focused on users and asked them how they decide what information to believe and what advice to act on.  If indeed there are problems with the quality of online health information, do consumers use sensible strategies to separate the good from the bad?

In a national survey conducted March 1-31, 2002, the Pew Internet Project found that 62% of Internet users, or 73 million people in the United States, have gone online in search of health information.  For shorthand purposes, we call them “health seekers” throughout this report. About 6 million Americans go online for medical advice on a typical day. That means more people go online for medical advice on any given day than actually visit health professionals, according to figures provided by the American Medical Association.

Experts say that Internet users should check a health site’s sponsor, check the date of the information, set aside ample time for a health search, and visit four to six sites.  In reality, most health seekers go online without a definite research plan.  The typical health seeker starts at a search site, not a medical site, and visits two to five sites during an average visit.  She spends at least thirty minutes on a search.  She feels reassured by advice that matches what she already knew about a condition and by statements that are repeated at more than one site.   She is likely to turn away from sites that seem to be selling something or don’t clearly identify the source of the information.  And about one third of health seekers who find relevant information online bring it to their doctor for a final quality check.

Only about one quarter of health seekers follow the recommended protocol on thoroughly checking the source and timeliness of information and are vigilant about verifying a site’s information every time they search for health information.  Another quarter of health seekers check a site’s information “most of the time.”  Half of all health seekers search for medical advice and “only sometimes,” “hardly ever,” or “never” check the source or date of the information they read online.

Health seekers seem to look for specific answers to targeted questions and are generally cautious about making decisions based on the information they find. They often use the information in making important decisions about interacting with their doctors, getting diagnoses, and treatments. But the ease of using the Internet and the abundance of health information online are not changing their entire approach to health care.

Some 72% of online women have gone online for health information, compared with 51% of online men. And 71% of Internet users between 50 and 64 years old have gone online for health information, compared with 53% of those between 18 and 29.  Those with more education and more Internet experience are more likely to search for medical advice online. There are no significant differences between whites, African Americans, and Hispanics when it comes to online health research.

In a special survey of 500 Internet users who go online for health care information, conducted June 19-August 6, 2001, we found the following:

Disease information, material about weight control, and facts about prescription drugs top the list of interests for health seekers. We also see big increases in use of the Internet for mental health information and sensitive medical topics.

The list below suggests the variety of things health seekers do online. We also asked for the first time about alternative medicine and saw that substantial numbers of Internet users go online for such material.

  • 93% of health seekers have gone online to look for information about a particular illness or condition.
  • 65% of health seekers have looked for information about nutrition, exercise, or weight control.
  • 64% of health seekers have looked for information about prescription drugs.
  • 55% of health seekers have gathered information before visiting a doctor.
  • 48% of health seekers have looked for information about alternative or experimental treatments or medicines.
  • 39% of health seekers have looked for information about a mental health issue such as depression or anxiety (up from 26% in August 2000).
  • 33% of health seekers have looked for information about a sensitive health topic that is difficult to talk about (up from 16% in August 2000).
  • 32% of health seekers have looked for information about a particular doctor or hospital.

A typical health seeker searches for medical information only occasionally, and she relies on search engines and multiple sites

The typical health seeker is a sporadic user of online medical information. More than half of health seekers (58%) do health searches every few months or even less frequently. A typical seeker goes online to see what she can find without getting advice about where or how to search from anyone, including medical professionals or friends. She visits several sites during a typical search and does not have a favorite site.

Successful searches, varying impacts

Even without any outside help, the typical health seeker feels it is quite easy to get the information she needs. Eighty-two percent say they find what they are looking for “most of the time” or “always.”  Fully 61% of health seekers, or 45 million Americans, say the Internet has improved the way they take care of their health either “a lot” or “some.”  This is a significant increase from an August 2000 Pew Internet Project poll that found that 48% of health seekers, or 25 million Americans, said the Internet improved the way they take care of themselves.

One in three health seekers know someone who has been appreciably helped by following medical advice or health information they found on the Internet.  Just 2% of health seekers know someone who has been seriously harmed by following medical advice or health information they found on the Internet.

The impact of their online searches

In most cases, the information they find online is helpful as they make decisions about how to take care of themselves or loved one. Overall, when we asked these health seekers about their most recent search for information, 68% said it had some impact on their decisions related to their own health care or a loved one’s care. About 16% said it had a major impact on their own health care routine or the way they helped care for someone else; 52% said the information had a minor impact; 31% said it had no impact at all. 

Different degrees of vigilance about the information health seekers find on the Web

Respondents fall into three broad groups.  About one quarter are vigilant about verifying a site’s information, another quarter are concerned about the quality of the information they find but follow a more casual protocol, and half rely on their own common sense and rarely check the source of the information, the date when the information was posted, or a site’s privacy policy. 

Perhaps one of the reasons why health seekers are generally casual in their approach to verifying online information is that they trust the online environment. Fully 72% of health seekers say you can believe all or most of the health information online.  Indeed, 69% of health seekers say they have not seen any wrong or misleading health info on the Web, while 28% of health seekers say they have seen bad information.

Credibility killers: Why health seekers turn away from Web sites

Still, 73% of health seekers have at some point rejected information from a Web site during a health search for one reason or another. Here are the major reasons they cite for turning away from a site:

  • 47% of health seekers have decided not to use information they found because the Web site is “too commercial and seemed more concerned with selling products than providing accurate information.”
  • 42% of health seekers have turned away from a health Web site because they couldn’t determine the source of the information.
  • 37% of health seekers have turned away from a health Web site because they couldn’t determine when the information was last updated.
  • Other reasons for turning away:  no visible “seal of approval,” sloppy or unprofessional design, or the presence of bad information (as judged by the health seeker or the health seeker’s own doctor).

Health seekers still rely on doctors for guidance

While there is great concern in the medical establishment that e-patients are self-diagnosing and self-medicating because of the information they can find online, only a modest number of Internet users say they are substituting online information for doctor’s advice. One in five health seekers (18%) say they have gone online to diagnose or treat a medical condition on their own, without consulting their doctor.

Despite reports that doctors are upset with patients who march into the examining room with Web printouts, our respondents tell a different story. When we asked health seekers about their most recent episode of online searching, 37% say they talked to a doctor or other health care professional about the information they found during their search. Of those who talked to an expert, 79% say their doctor was interested in the information found online.  Just 13% who talked to their doctor got the cold shoulder and report that the health care professional was “not too interested” or “not at all interested.”  Of those who chose not to talk to a health care professional, most deemed the topic too insignificant to seek expert advice.  Just 2% of health seekers who did not talk to a doctor say it was because they didn’t think their doctor would listen.