E-patients and the online health care revolution

E-patients and the online health care revolution – E-Health

Susannah Fox


Check out the latest statistics on the number of patients seeking health care advice an the Internet. Learn what your patients are looking for and what they find.

WE ARE IN THE EARLY stages of a transition to an Information Age in health care.

Doctors are no longer the only sources of medical advice for consumers. E-patients (Internet users who go online for health information) are placing themselves at the center of a network of sources, including search engines, online support groups and health Web sites.

Not every American wants to go online or become an amateur medical detective, but today’s e-patients are a leading indicator of where health care is headed.

In November 2000, the Pew Internet & American Life Project reported that 52 million American adults relied on the Internet to make critical health decisions. Two years later, we 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.

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.

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.

* One mother told us in an online focus group that she uses the Internet to try to “avoid lugging four kids to the doctor for something that I can take care of with over-the-counter medication.”

* Another mom goes online to see if her teenager is faking his illness to avoid school–if his symptoms check out, she takes him to the doctor.

* Someone living with a chronic condition found that online research improved her quality of life in ways that her doctor deemed too insignificant to mention. “My hair fell out in gobs for years,” she said. “I found out on the Web that the medication I was on did that. Only then did [my doctor] say yes, he knew it could do that. I had told him previously about the hair loss.” This e-patient was unhappy that her doctor had omitted key information from their conversations, but she was grateful to members of her online support group who posted the truth.

Bad advice?

The news is not all good, 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?

Experts say 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 e-patients go online without a definite research plan.

The typical e-patient starts at a search site, not a medical site, and visits two to five sites during an average visit. She–the majority of e-patients are women–spends at least 30 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 e-patients who find relevant information online bring it to their doctor for a final quality check.

Only about one quarter of e-patients 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 e-patients check a site’s information “most of the time.” Half of all e-patients search for medical advice and “only sometimes,” “hardly ever,” or “never” check the source or date of the information they read online.

E-patients 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 percent of online women have gone online for health information, compared with 51 percent of online men.

* And 71 percent of Internet users between 50 and 64 years old have gone online for health information, compared with 53 percent 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.

And the survey found

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 e-patients.

* 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 e-patients 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 percent went online to look for information about a particular illness or condition.

* 65 percent looked for information about nutrition, exercise or weight control.

* 64 percent looked for information about prescription drugs.

* 55 percent gathered information before visiting a doctor.

* 48 percent looked for information about alternative or experimental treatments or medicines.

* 39 percent looked for information about a mental health issue such as depression or anxiety (up from 26 percent in August 2000).

* 33 percent looked for information about a sensitive health topic that is difficult to talk about (up from 16 percent in August 2000).

* 32 percent looked for information about a particular doctor or hospital.

A typical e-patient searches for medical information only occasionally, and she relies on search engines and multiple sites

The typical e-patient is a sporadic user of online medical information. More than half (58 percent) do health searches every few months or even less frequently.

A typical e-patient 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 e-patient 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 percent of e-patients, 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 percent of e-patients, or 25 million Americans, said the Internet improved the way they take care of themselves.

One in three e-patients know someone who has been appreciably helped by following medical advice or health information they found on the Internet. Just two percent of e-patients know someone who has been seriously harmed by following medical advice or health information they found on the Internet.

Credibility killers

Seventy-three percent of e-patients 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 list for turning away from a site:

* 47 percent 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 percent turned away from a health Web site because they couldn’t determine the source of the information.

* 37 percent rejected 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 e-patient or the e-patient’s own doctor).

E-patients still rely on doctors

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 e-patients (18 percent) 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 e-patients about their most recent episode of online searching, 37 percent 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 percent say their doctor was interested in the information found online. Just 13 percent 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 two percent of e-patients who did not talk to a doctor say it was because they didn’t think their doctor would listen.

When we asked focus group participants about their relationships with their doctors, most confirmed the positive trend toward receptive doctors.

* One participant said he talks to his doctor about what he finds online because “sometimes I just need his reassurance I interpreted my info correctly.”

* However, another participant had a different experience when she brought in Web printouts, relating that her doctor “got mad, like I didn’t trust him. Actually, I didn’t. So I changed doctors.”

The most experienced e-patients prepare for their appointments, shop around for alternative treatments and do not hesitate to exercise their newfound power. Savvy health professionals will partner with this new breed and help them navigate to the best advice, whether it’s online or off-line.

About the Pew Internet & American Life Project

The Pew Internet & American Life Project creates and funds original, academic-quality research that explores the impact of the Internet on children, families, communities, the workplace, schools, health care, and civic and political life. The project is an independent, nonpartisan organization that aims to be an authoritative source for timely information on the Internet’s growth and its impact on society. The project is fully funded by The Pew Charitable Trusts.

RELATED ARTICLE: Who Are e-patients?

* 73 million American adults — 6 million on any given day

* 14 million teenagers

* Online women more than online men (72% vs. 51%) and girls more than boys

* Middle aged (30-64) more than the young or the old

* Only minor differences tied to race

Why They Like Internet Searches

93% of health seekers say it is important that they can get health information when it is convenient for them.

83% of health seekers say it is important that they can get more health information online than they can get from other sources.

80% of health seekers say it is important that they can get this information anonymously, without having to talk to anyone.

Three Types of e-patients

Vigilant: 25% “always” check the source, date, and privacy policy of a health Web site.

Concerned: 25% check “most of the time.”

Unconcerned: 50% “only sometimes,” “hardly ever,” or “never” check.

Susannah Fox is director of research at the Pew Internet & American Life Project in Washington, D.C. She can be reached by phone at 202/557 3462 or by e-mail at sfox@pewinternet.org.

Lee Rainie is director of the Pew Internet & American Life Project in Washington, D.C. He can be reached by phone at 202/557 3462 or by e-mail at lranie@pewinternet.org.

COPYRIGHT 2002 American College of Physician Executives

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