July 16, 2003

Internet Health Resources

Part 1. Internet Health Resources

The number of health seekers continues to increase.

The Pew Internet & American Life Project first began tracking Internet behavior relating to health in March 2000. At that time, 54% of all U.S. Internet users, or about 50 million American adults, said “yes” when we asked if they looked for health or medical information online. We dubbed these Internet users “health seekers.” Since that time, the numbers have been steadily rising. By March 2003, 66% of Internet users, or 77 million American adults, said they go online to look for health or medical information.

In December 2002, we explored this general question about health and medical searches in a more detailed way. We elaborated on our question to ask respondents if they had done searches for a number of specific health and medical topics, e.g., “Have you ever looked online for information about exercise or fitness? For information about immunizations or vaccinations?” These reminders apparently prompted some Internet users about certain health-related searches they had done online, and it is not surprising to note that the number of health seekers rose dramatically. Eighty percent of adult Internet users, or almost half of Americans over the age of 18 (about 93 million), say they have researched at least one of those specific health topics at some point.

“Health seekers” — Internet users who search online for information on health topics, whether they are acting as consumers, caregivers, or e-patients

While everyone agrees that the number of health seekers is rising, the way to establish that number is a matter of debate. Recent reports, one by the Center for Studying Health System Change11 and another by a team of Stanford researchers,12 have estimated a lower population of health seekers by limiting the scope of their survey questions. We deliberately keep the timeframe open, asking if respondents had “ever” searched for a health topic, because it has been our observation that once an Internet user has been successful in an online endeavor, she will return to it the next time she has a similar problem or question, no matter how much time has lapsed between the searches. We also do not limit respondents to thinking exclusively about their own health concerns since our past research shows that more than half of Internet health searches are conducted on behalf of someone else. Indeed, for most Americans, health is a family affair, not a solitary activity. Finally, for the first time, we asked questions of respondents about 16 specific health topics, rather than just asking them about general health searches, and this drove up the number of Internet users who say they have searched for health-related topics online.

We do not mean to imply, however, that an increase in the use of Internet health resources is a cure-all.  The Center for Studying Health System Change makes an excellent point when they write about how “significant challenges lie ahead in educating consumers about trade-offs among the cost, quality, and accessibility of care.”13  Even if more Americans do gain access to the Internet and online health information, low health literacy limits many Americans’ ability to understand what is available online.14

The reason to change our basic questionnaire was simple: We were interested in examining in more detail how health seekers were using the Internet for health interests.  Many public officials, advocate groups, health researchers, and interested citizens have asked us for more detailed information about the types of health information searches people do online. They ask: Which health topics are people most interested in? How do people apply the fruits of their online research to their health and health care? How do people communicate about their health issues online; using email, message boards, chats? What kind of impact do these communications have on their lives? And what is missing: What would today’s health seekers like to see developed in the future?

It was our hunch that this would be an opportune moment to ask such questions. While the Internet population has stabilized at about 60% of Americans over the last 2 years, the number of “veteran” Internet users has grown substantially.15 We know, among other things, that the longer someone has been online, the more effectively she uses the Internet. Veteran users do more things online, feel more confident about their ability to find valuable information on the Web, and report using that information to make decisions in their lives.16 We wondered how this more experienced population was using the Internet for health care and medical information.

“Veteran” Internet user — someone who has been online for 3 or more years

The Pew Internet Project conducted two kinds of surveys for this report: First, we invited Internet users to share their stories in an online survey. We posted announcements in four online venues — Braintalk.org, which hosts online patient support groups for neurology; DrGreene.com, a pediatric information site; ACOR.org, which hosts online support groups for “everyone affected by cancer and related disorders”; and our own site, pewinternet.org. We also placed an announcement in a syndicated newspaper column by Joe and Terry Graedon, called “The People’s Pharmacy.” Nearly 2,000 Internet users answered 20 short-answer questions about whether they use the Internet to research symptoms, email loved ones, connect to online support groups, and communicate with their doctors. Second, in December 2002, we conducted a telephone survey with 2,038 Americans, aged 18 or older, 1,220 of whom are Internet users. In that survey, we asked detailed questions about different kinds of health searches.

Popular topics include specific diseases and treatments, plus diet and fitness information.

Health topics Searched Online: In all, 80% of American Internet users have searched for information on at least one major health topic online. Many have searched for several kinds of information.

Women and well-educated Internet users are the most likely to search for health information online.

In general, women are more likely than men to have looked online for information on most health topics, especially in such areas as information about a specific disease, alternative treatments, diet, nutrition, vitamins, or nutritional supplements. There are topics which interest men and women equally, such as fitness information, experimental treatments, and environmental health hazards.

Better-educated and higher-income Internet users are more likely to have searched for health information. Those under the age of 65 are more likely than wired seniors to have looked for health information online (about 80% of Internet users between 18 and 64 years old vs. 70% of wired seniors, age 65+), possibly because most seniors are newcomers to the Internet and therefore less likely to do any kind of search. And, while whites are more likely than African Americans or English-speaking Hispanics to have searched for health information online (82% vs. 76% and 75%, respectively), those differences diminish when other demographic factors are held constant.  That is, differences in education levels largely explain why different people are more or less likely to look for health care information online.  Those with high educational levels are more likely to be a health seeker than the less educated; race and ethnicity (i.e., whether one is African American or an English-speaking Hispanic) does not affect the likelihood that one is an online health seeker.

Veteran Internet users are more likely than newcomers to have searched for health information – 77% of those with 2-3 years of online experience, compared to 59% of those with less than one year of experience online.  And while dial-up users match the general population – 80% have searched for health information – fully 89% of Internet users with a high-speed connection at home have performed such a search.

Broadband users are more likely to search for health information than dial-up users.

The average Internet user has searched for four of the sixteen health topics we surveyed. Twenty-nine percent of Internet users have searched for at least seven topics. Women are more likely than men to be wide-ranging health seekers; home broadband users are more likely than dial-up users to have searched for seven or more topics.

Internet users Internet users

Specific disease

Sixty-three percent of Internet users have at some point looked for information about a specific disease or medical problem. One respondent to our online survey wrote about a common effect: “Information available on the Internet takes the mystery out of illness and gives the patient a sense of power over his/her condition.” Another respondent shared more dramatic consequences of her search: “As the parent of a child with a very rare neurological syndrome, the Internet was vital to putting the pieces of a puzzle together. It saved my son months of struggle when I found a diagnosis prior to the neurologist he was seeing, who openly admitted she had only heard of the syndrome but never treated a child with [Landau-Kleffner Syndrome].”17

As a topic, information about a specific disease or medical problem illustrates well the typical differences among demographic groups. Women are more likely than men to have done such searches (72% vs. 54%). Middle-aged Internet users are more likely than younger or older adult Internet users to have searched (66% of 30-49 year-olds vs. 55% of 18-29 year-olds). College graduates are more likely than those who have not graduated from high school (68% vs. 52%). Internet users who saw a doctor in the past year are more likely to have looked for this type of information than those who did not see a doctor (68% vs. 45%). Those who are living with a chronic illness or disability are more likely than those who are not dealing with a major health problem (85% vs. 61%). And, as we have noted, long-time Internet users are more likely to have searched for information about a specific disease than newcomers (64% of Internet users who have had access for 4-5 years vs. 43% of Internet users who have had access for less than one year).

Medical procedures and treatments

Forty-seven percent of Internet users have at some point searched online for information about a certain medical treatment or procedure. Caregivers who live with someone who is chronically ill or disabled, a group of searchers who make thorough and frequent use the Internet for health issues, are particularly likely to have searched for information about a specific treatment – 62% have done so. One woman wrote about how she scours the Internet for ways to extend her husband’s life by slowing the progression of Amyotrophic Lateral Sclerosis (ALS or Lou Gehrig’s disease).18 “There is no expert at treating this disease,” she wrote. “Only experts at diagnosing it.” Internet users often gather information from online sources in order to share in treatment decisions. Another respondent wrote that she brings peer-reviewed medical journal articles to her orthopedist, but adds that, “I do not insist on the procedure, but use the articles as a starting point to discuss new treatment options when we both seem stymied.”

Diet and nutrition

Forty-four percent of Internet users have searched online for information about diet, nutrition, vitamins, or nutritional supplements. Some of these searches are certainly for weight management – indeed, diet sites are among the most popular on the Web, especially during the season for New Year’s resolutions.19 Other Internet users may be dealing with allergies or conditions like diabetes or high blood pressure that require a special diet. One mother wrote in our online survey said she uses an online gluten-free food list almost daily to help with the dietary restrictions facing her family.

Fitness

Thirty-six percent of Internet users have searched online for information about exercise or fitness. Internet users between the ages of 18 and 29 are the most likely to have searched for this type of information – 51%, compared to 35% of 30-49 year-olds, 28% of 50-64 year-olds, and just 13% of Internet users age 65 or older.

Prescription and over-the-counter drugs

Thirty-four percent of Internet users have ever searched online for information about prescription or over-the-counter drugs. Online survey respondents were quite enthusiastic about the details about drugs they can find, whether on a Web site or in online discussions with fellow patients. “I can get first hand knowledge about the drugs I am taking,” one person wrote. “I can find out the side effects and how really useful the drug is and any drug interactions.” Another wrote that when faced with a regimen requiring daily self-injections, she turned to an online support group. “I got a huge amount of support and education when I started on this med,” she wrote. “It took away my fear and apprehension, and answered my questions related to taking this drug.”

Alternative medicine

Twenty-eight percent of Internet users have searched online for information about alternative treatments or medicines. One respondent to our online survey wrote that she appreciates the information available on pain management sites, noting that massage and acupuncture are among the only treatments that alleviate her “constant pain” from a repetitive stress injury.

Health insurance

Twenty-five percent of Internet users have searched online for information related to health insurance. Parents are more likely than non-parents to have searched for this type of information – 29%, compared to 23%. One respondent to our online survey wrote that she had read about a new procedure to treat back pain and then consulted her insurance company’s Web site to see if it is covered (it was not, so her husband’s treatment had to wait).

Mental health

Twenty-one percent of Internet users have searched online for information about depression, anxiety, stress, or mental health issues. Caregivers who live with a care recipient are more likely than other Internet users to have searched for this information – 37% have done so. Internet users who are living with a chronic disease or disability are also more likely to make these kinds of searches – 37% have searched for mental health information. One respondent to our online survey who is living with depression and borderline personality disorder wrote, “Doctors do not spend enough time explaining or consoling. Reading and learning exactly what my conditions are helps me to cope.”

Particular doctor or hospital

Twenty-one percent of Internet users have searched online for information about a particular doctor or hospital. “The Internet allows me to get a variety of expert opinions from some of our country’s top physicians,” wrote one Internet user caring for her husband. Another respondent wrote: “I found my doctor by writing a short description of my symptoms and he pre-authorized an immediate appointment with him.”

Experimental treatments

Eighteen percent of Internet users have searched online for information about experimental treatments or medicines. Thirty-seven percent of Internet users living with a chronic disease or disability and 35% of wired caregivers living with a care recipient have done this type of online research. “The doctors do not have the time to remain current in the information about every disorder, so I give the doc the cutting edge information on mine so that I can benefit from new thoughts and therapies,” one respondent to our online survey wrote. “I am my own medical advocate.”

Environmental health hazards

Seventeen percent of Internet users have searched online for information about environmental health hazards. “I live in a manufactured home purchased new in 1997,” wrote one respondent. “I was diagnosed (Porphyria – 3 forms)20 in 1998. It was only through the Internet that I was able to learn that the house was making me very ill, supersensitive even for a Porph. It was through these sources that I was able to learn what can be done to make the house safer for me.” She is now living in a “detoxed” apartment while her house is made over with safe materials.

Immunizations

Thirteen percent of Internet users have searched online for information about immunizations or vaccinations. Younger users are more likely to have searched for this information (19% of 18-29 year-old Internet users, compared to 12% of 30-49 year-olds and 7% of 50-64 year-olds). Parents are also more likely (15%, compared to 11% of non-parent Internet users). A number of respondents to our online survey mentioned that they “found out online” about vaccinations that cause other health problems – and some decided to delay vaccinations for their own children.

Sexual health

Ten percent of Internet users have searched online for information about sexual health information. Nineteen percent of Internet users between 18-29 years old have done so, compared to 8% of 30-49 year-old users. One woman, who had been told by her doctor that a hysterectomy would not affect her sex drive, wrote, “If I had the resources of the Internet then, I would have not had the surgery knowing that this doctor was not telling me the truth about the after-effects and outcomes of hysterectomy.” She has since found out that she is not alone in experiencing diminished interest in sex.

Medicare and Medicaid

Nine percent of Internet users have searched online for information about Medicare or Medicaid. Not surprisingly, this is the one topic where wired seniors lead every other age group – 19% of Internet users age 65 and older have searched for Medicare or Medicaid information. Twenty-three percent of Internet users living with a chronic disease or disability have researched Medicare or Medicaid online. Twenty-one percent of wired caregivers living with a care recipient have done so.

Problems with drugs or alcohol

Eight percent of Internet users have searched online for information about problems with drugs or alcohol. Fourteen percent of 18-29 year-old Internet users have done so, compared to 7% of 30-49 year-old Internet users. One woman wrote about her appreciation for Braintalk.org, which hosts online patient support groups for neurology: “Because I am a recovering alcoholic, [Alcoholics Anonymous] meetings have been very important to me in my 18 years of sobriety… Since there isn’t a physical meeting close to me, I feel as if this online forum is a life-saver for me.”

Smoking cessation

Six percent of Internet users have searched online for information about how to quit smoking. Eighteen percent of Internet users with less than a high school education have searched for smoking cessation information, compared to 6% of high school graduates and 4% of college graduates. One fan of the Web site emphysema.net (also known as EFFORTS) wrote, “I was diagnosed with emphysema in 1994. I had no idea what that really meant. I knew I needed to quit smoking but didn’t really know why. Then I joined EFFORTS a couple years ago and I have learned more about my disease and what I can do for myself than anywhere. I quit smoking and got into an exercise plan and now feel better than ever.”

Domestic violence

In addition to the sixteen topics listed above, we found that 8% of Internet users have searched online for information about domestic violence. Twelve percent of Internet users between 18-29 years old have looked for this type of information, compared to 5% of 50-64 year-old Internet users.

Most search every few months, or less often.

But most health seekers search infrequently. Eight out of ten health seekers search “every few months” or less often than that (78%).21 This updates findings by the Center for Studying Health System Change, whose 2001 survey also found that most Americans had not gathered health information online during the previous year.22 Our findings also parallel those of the Institute for the Future, which found that the majority (60%) of health seekers are in good health and search infrequently.  However, 35% of health seekers are what the researchers termed the “Chronic Stable” and 5% are categorized as “Newly Diagnosed.”  These Internet users are likely to search more frequently than the “Well.”23

As we have found in our previous studies, most e-patients are searching when the need arises, often reacting to a symptom or a diagnosis. For example, one respondent to our online survey wrote, “My mother-in-law suddenly began bruising very badly. Medical personnel simply said it was because she was old. I was not satisfied with this answer because the onset was so sudden. Turning to the Internet, I found it was because her aspirin dosage was too high.” After consulting with a doctor, this caregiver lowered the aspirin dosage, gave her mother-in-law chewable vitamin C tablets with bioflavonoids, and the bruising cleared up within weeks.

  1. Tu, Ha and J. Lee Hargraves. “Seeking Health Care Information: Most Consumers Still On Sidelines.” (Center for Studying Health System Change: March 2003.)
  2. Baker, Laurence; Todd Wagner; Sara Singer; and M. Kate Bundorf. “Use of the Internet and E-mail Health Care Information.” (Journal of the American Medical Association: May 14, 2003—Vol. 289, No. 18.)
  3. Tu, 2003.
  4. Baur, Cynthia. “The Internet and Health Literacy: Moving Beyond the Brochure.” In Schwartzberg, J.G., J. VanGeest, C.C. Wang (Editors). Understanding Health Literacy: Implications for Medicine and Public Health. (Chicago: AMA Press, 2004.)
  5. Lenhart, Amanda. “Ever-Shifting Internet Population.” (Pew Internet & American Life Project: April 2003.) Available at http://www.pewinternet.org/Reports/2003/The-EverShifting-Internet-Population-A-new-look-at-Internet-access-and-the-digital-divide.aspx
  6. Horrigan, John. “Getting Serious Online.” (Pew Internet & American Life Project: March 2002.) Available at http://www.pewinternet.org/Reports/2002/Getting-Serious-Online-As-Americans-Gain-Experience-They-Pursue-More-Serious-Activities.aspx
  7. Landau-Kleffner Syndrome is a rare neurological disorder affecting a child’s comprehension of speech.
  8. ALS is a degenerative neurological disorder primarily affecting the brain and spinal cord.
  9. Jupiter Media Metrix January 2002 Internet Audience Ratings. Available at: http://www.comscore.com/press/release.asp?id=270
  10. Porphyria is a group of disorders characterized by the accumulation of natural chemicals called “porphyrins” or “porphyrin precursors.” Environmental factors can affect the severity of symptoms, which show up in the nervous system or on skin.
  11. 2% of health seekers search for health or medical advice or information every day; 4% search several times a week; 14% search several times a month; 32% search every few months; 46% search less often than that.
  12. Tu, 2003.
  13. Cain, Mary M., Jane Sarasohn-Kahn, and Jennifer C. Wayne. “Health E-People: The Online Consumer Experience.” (Institute for the Future/California HealthCare Foundation: August 2000). Available at: http://www.iftf.org/html/researchareas/hc_research/chcf/