“I don’t know, but I can try to find out” is the default setting for people with health questions.

The internet has changed people’s relationships with information. Our data consistently show that doctors, nurses, and other health professionals continue to be the first choice for most people with health concerns, but online resources, including advice from peers, are a significant source of health information in the U.S.

These findings are based on a national telephone survey conducted in August and September 2010 among 3,001 adults in the U.S. The complete methodology and results are appended to this report.

The survey finds that, of the 74% of adults who use the internet:

• 80% of internet users have looked online for information about any of 15 health topics such as a specific disease or treatment. This translates to 59% of all adults.
• 34% of internet users, or 25% of adults, have read someone else’s commentary or experience about health or medical issues on an online news group, website, or blog.
• 25% of internet users, or 19% of adults, have watched an online video about health or medical issues.
• 24% of internet users, or 18% of adults, have consulted online reviews of particular drugs or medical treatments.
• 18% of internet users, or 13% of adults, have gone online to find others who might have health concerns similar to theirs.
• 16% of internet users, or 12% of adults, have consulted online rankings or reviews of doctors or other providers.
• 15% of internet users, or 11% of adults, have consulted online rankings or reviews of hospitals or other medical facilities.

Of those who use social network sites (62% of adult internet users, or 46% of all adults):

• 23% of social network site users, or 11% of adults, have followed their friends’ personal health experiences or updates on the site.
• 17% of social network site users, or 8% of adults, have used social networking sites to remember or memorialize other people who suffered from a certain health condition.
• 15% of social network site users, or 7% of adults, have gotten any health information on the sites.

“I know, and I want to share my knowledge” is the leading edge of health care.

As broadband and mobile access spreads, more people have the ability – and increasingly, the habit – of sharing what they are doing or thinking. In health care this translates to people tracking their workout routines, posting reviews of their medical treatments, and raising awareness about certain health conditions.

These are not yet mainstream activities, but there are pockets of highly-engaged patients and caregivers who are taking an active role in tracking and sharing what they have learned.

Of adults who use the internet:

• 27% of internet users, or 20% of adults, have tracked their weight, diet, exercise routine or some other health indicators or symptoms online.
• 6% of internet users, or 4% of adults, have posted comments, questions or information about health or medical issues on a website of any kind, such as a health site or news site that allows comments and discussion.
• 4% of internet users, or 3% of adults, have posted their experiences with a particular drug or medical treatment.
• 4% of internet users, or 3% of adults, have posted a review online of a doctor.
• 3% of internet users, or 2% of adults, have posted a review online of a hospital.

Of adults who use social network sites:

• 14% of social network site users, or 6% of adults, have raised money for or drawn attention to a health-related issue or cause.
• 11% of social network site users, or 5% of adults, have posted comments, queries, or information about health or medical matters.
• 9% of social network site users, or 4% of adults, have started or joined a health-related group on a social networking site.

The social life of health information is robust. The online conversation about health is being driven forward by two forces:  1) the availability of social tools and 2) the motivation, especially among people living with chronic conditions, to connect with each other.

This report is the result of collaboration between the Pew Internet Project and the California HealthCare Foundation.

The Pew Internet & American Life Project is an initiative of the Pew Research Center, a nonprofit “fact tank” that provides information on the issues, attitudes and trends shaping America and the world. The Project is nonpartisan and takes no position on policy issues. Support is provided by The Pew Charitable Trusts.

The California HealthCare Foundation is an independent philanthropy committed to improving the way health care is delivered and financed in California.

All quantitative, numerical data is based on a September 2010 national telephone survey conducted by Princeton Survey Research Associates International (PSRAI).

PSRAI is an independent firm dedicated to high-quality research providing reliable, valid results for clients in the United States and around the world.

Health professionals and offline resources are central, but people use online social tools, too.

This report sets out to illuminate the different ways people seek health information as well as how people use online social tools to share knowledge with loved ones, fellow patients, and caregivers.

When asked to think about the last time they had a health issue, 71% of adults in the U.S. say they received information, care, or support from a health professional. Fifty-five percent of adults say they received such help from friends and family. Twenty-one percent of adults say they turned to others who have the same health condition for information, care, or suppport. The vast majority of respondents say those interactions happened offline.

However, three-quarters of U.S. adults (74%) use the internet and, of those, many participate in an online conversation about health. For example:

• 80% of internet users have looked online for information about any one of 15 health topics such as a specific disease or treatment. This translates to 59% of all adults.
• 34% of internet users have read someone else’s commentary or experience about health or medical issues on an online news group, website, or blog.
• 14% of internet users have signed up to receive email updates or alerts about health or medical issues.
• 6% of internet users have posted comments, questions or information about health or medical issues on a website of some kind, such as a health site or news site that allows comments and discussion.
• 5% of internet users have posted health-related comments, questions, or information in an online discussion, a listserv, or other online group forum.
• 4% of internet users have posted such comments, questions or information on a blog.

These findings are similar to those we reported in 2009.

This survey is the first time we collected the following data point:

• 25% of internet users have watched an online video about health or medical issues.

Internet users living with one or more chronic conditions are more likely than those who report no conditions to have done three of the above activities: 37% have read someone else’s health commentary online (vs. 31% of those reporting no chronic conditions), 31% have watched a health video online (vs. 22% of those reporting no chronic conditions), and 23% have signed up to receive email updates about certain health topics (vs. 9% of those reporting no chronic conditions).

Wireless users outpace other internet users on every one of the above activities by significant margins. For example, 37% of wireless users have read about someone else’s health experience online, compared with 24% of other internet users. Twenty-seven percent of wireless users have watched an online health video, compared with 21% of other users.

Social network sites are popular, but used only sparingly for health updates and queries.

As of September 2010, 62% of adult internet users report using a social network site like MySpace or Facebook. Of that group:

• 23% of social networking site users have followed their friends’ personal health experiences or updates on the site. This translates to 11% of all adults.
• 17% have used social network sites to remember or memorialize other people who suffered from a certain health condition.
• 15% have gotten any health information on the sites.
• 14% have raised money for or drawn attention to a health-related issue or cause.
• 11% have posted comments, queries, or information about health or medical matters.
• 9% have started or joined a health-related group on a social networking site.

People caring for loved ones are more likely than other adults to use social network sites to gather and share health information and support.

More than a quarter of adults in the U.S. provide unpaid care to a loved one. Twenty-seven percent of adults care for an adult relative or friend; 5% of adults care for a child with a health condition or disability.¹⁰

Caregivers are one group that is significantly more likely than others to use social network sites for health-related pursuits: 28% of caregivers who use social networks sites say they follow friends’ health updates, compared with 21% of other social network site users. Twenty percent of caregivers who use social network sites say they have gathered health information on such a site, compared with 12% of other users.

Social network sites are not a significant source of health information for most people, but they can be a source of encouragement and care. In a book about social support, Consequential Strangers, authors Melinda Blau and Karen Fingerman write about how people in our wide circles of acquaintance “offer practical assistance, firsthand information, and a special brand of no-strings emotional comfort.”¹¹

On a practical level, the vast majority of people living with chronic conditions never attend traditional, in-person support group meetings, although studies show they could benefit from such groups.¹² Instead, people often mobilize their “social convoy” of family members, friends, colleagues, fellow patients, and fellow caregivers – many of whom are now connected online via email, social network sites, or by other means. As Blau and Fingerman describe it:

A natural network provides a safety net and puts the patient in charge—a good balance in any situation. Think of it as customizing your convoy. If people who are already on board don’t have the information, experience, or empathy you need, you enlist others who do.¹³

In a pattern that matches this observation, people living with one or more chronic conditions and those living with disability¹⁴ are significantly more likely than other social network site users to gather health information on these sites. Twenty percent of social network site users living with chronic conditions do so, compared with 12% of social network site users who report no chronic conditions. Twenty-three percent of social network site users living with disability get health information on these sites, compared with 13% of those who report no disability.

Relatively few use hospital ranking and doctor review sites.

Hospital and doctor review sites have not yet become health care decision-making tools for most consumers. One national survey found that only 6% of American adults are aware of the Centers for Medicare & Medicaid’s Hospital Compare tool.¹⁵ Our current survey finds a similarly low usage of such sites among adult internet users, matching trends we first reported in 2009.¹⁶

• 16% of internet users have consulted online rankings or reviews of doctors or other providers.
• 15% of internet users have consulted online rankings or reviews of hospitals or other medical facilities.
• 4% of internet users have posted a review online of a doctor.
• 3% of internet users have posted a review online of a hospital.

Again, caregivers are more likely than other groups to engage in these activities. For example, 21% of online caregivers consult online doctor reviews, compared with 13% of internet users not currently caring for a loved one. Twenty percent of online caregivers consult online hospital reviews, compared with 12% of other internet users.

Eighteen percent of internet users living with one or more chronic conditions have looked online for doctor rankings or reviews, compared with 14% of internet users who report no conditions. Six percent of internet users living with chronic disease have posted such a review, compared with 3% of those who report no conditions. Both of those differences are statistically significant, but more importantly, they are significant because of the context of who is most likely to be a frequent health care consumer: someone living with a chronic condition.

Internet users living with disability do not report a higher or lower likelihood to consult hospital rankings and doctor reviews. However, they are more likely than other internet users to post reviews of doctors and other health professionals online: 8% do so, compared with 4% of those who report no disability.

One in four adult internet users have consulted online reviews of drugs or treatments.

In November 2009, the U.S. Food and Drug Administration held a public hearing on how companies use the internet, particularly social media, to promote prescription drugs, medical devices, and other regulated products.¹⁷  No regulations have been issued to date. But because of this heightened interest in how consumers gather and share information about drugs, we added a new category of online reviews to the current survey and find:

• 24% of internet users have consulted online reviews of particular drugs or medical treatments.
• 4% of internet users have posted their experiences with a particular drug or medical treatment.

Fully 38% of online caregivers have consulted online drug reviews, compared with 18% of internet users who do not take care of a loved one. Seven percent of online caregivers have posted such a review, compared with just 2% of other internet users.

Thirty-one percent of internet users living with one or more chronic conditions have looked at online drug reviews, compared with 20% of internet users reporting no conditions. Six percent of internet users living with chronic disease have posted an online review of a drug or treatment, compared with 2% of those with no conditions.

Internet users living with disability are just as likely as other people to look up drug reviews, but they are more likely than other people to say they have posted their own treatment experiences online. Nine percent of internet users living with disability say they have posted a review of a drug or treatment, compared with 2% of those who report no disability.

In a separate question we find that 24% of internet users say they go online to look for information about drug safety or recalls.¹⁸

One in four adult internet users track their own health data online.

Carol Torgan, a health science strategist, points out that anyone who makes note of their blood pressure, weight, or menstrual cycle could be categorized as a “self-tracker.”¹⁹ Add an online component, and you have the ingredients for a social health application or an electronic health record. Our survey finds that 15% of internet users have tracked their weight, diet, or exercise routine online. In addition, 17% of internet users have tracked any other health indicators or symptoms online.  Fully 27% of adult internet users say yes to either question.

Wireless users are more likely than other internet users to track health data online. Eighteen percent of wireless users have tracked their weight, diet, or exercise routine online, compared with 9% of internet users who do not have a wireless-enabled laptop or other device. Nineteen percent of wireless users have tracked any other health indicators or symptoms online, compared with 11% of non-wireless internet users.

Separately, looking just at the 85% of adults who own a cell phone, 9% say they have software applications or “apps” on their phones that help them track or manage their health.

More people report being helped, rather than harmed, by online health information.

One in three adults in the U.S. (30%) say they or someone they know has been helped by following medical advice or health information found online.

Fully 44% of caregivers report that online health resources have been helpful. Adults who went through a recent personal health change – gaining or losing a lot of weight, becoming pregnant, or quitting smoking – are also especially likely to report being helped by online resources: 40% do so, compared with 28% of other adults.

Ten percent of adults living with two or more chronic conditions – unfortunately a large and growing slice of the population in the U.S. – say they or someone they know has received major help from online health information, compared with 5% of adults who report no conditions.

Just 3% of adults say they or someone they know has been harmed.

Eight in ten adult internet users look for information online.

Again, 80% of internet users have looked online for information about at least one of the following topics:¹³

Internet access drives information access.

Since one-quarter of U.S. adults do not go online, the percentage of health information seekers is lower when calculated as a percentage of the total population: 59% of all adults in the U.S. look online for health information.

Women, non-Hispanic whites, younger adults, and those with higher levels of education and income are more likely than other demographic groups to gather health information online.

There are two forces at play in the data: access to the internet and interest in health information. For example, women and men are equally likely to have access to the internet, but women are more likely than men to report gathering health information online, which explains the gender gap in the chart below. For the other groups, their overall lower rate of internet adoption combined with lower levels of health information seeking online drives their numbers down significantly when compared with other adults.

As we have reported in the past, people who are living with chronic disease or disability are likely, if they have internet access, to be highly interested in online health information.¹⁴ For those two groups, it is their lack of access to the internet which holds them back from parity with people who report no chronic conditions or disability.

Two other groups with higher rates of online health information gathering include caregivers and people who went through a recent medical emergency.

Health information is going mobile.

Eighty-five percent of adults in the U.S. own a cell phone. Of those, 17% have used their phone to look up health or medical information. By comparison, seven in ten cell phone owners send or receive text messages; seven in ten use their phones to take pictures; four in ten access the internet on their phones; and 35% have software applications or “apps” on their phones.¹⁵

The typical search for health information is on behalf of someone else.

Half of internet users (48%) who go online for health information say their last search was on behalf of another person, 36% say their last search was on behalf of themselves, and 11% say it was both for themselves and someone else. Thus, while eight in ten internet users go online for health information, the impact of their inquiries may be even broader. And while some groups, such as the chronically ill and those living with disability, are less likely to be online and searching for health information, it does not mean that this information does not reach them through a surrogate of some kind.

One in five adult internet users have gone online to find others with health concerns similar to their own.

The internet connects people who share interests of all kinds and health is no exception. Eighteen percent of internet users have gone online to find others who might have health concerns similar to theirs.¹⁴ Twenty-three percent of internet users living with at least one of five chronic conditions named in the survey have looked online for someone with similar health concerns, compared with 15% of those who report no conditions.  

Health professionals, friends, family members, and fellow patients are all part of the mix.

Even with the proliferation of mobile and online opportunities, however, most adults’ search for health information remains anchored in the offline world. Most people turn to a health professional, friend, or family member when they have a health question; the internet plays a growing but still supplemental role – and mobile connectivity has not changed that. 

Again, when asked about the last time they had a health issue, 71% of adults in the U.S. say they received information, care, or support from a health professional. Fifty-five percent of adults say they turned to friends and family. Twenty-one percent of adults say they turned to others who have the same health condition.

The majority of these interactions happen offline: just 5% of adults say they received online information, care, or support from a health professional, 13% say they had online contact with friends and family, and 5% say they interacted online with fellow patients.

People turn to different sources for different kinds of information.

All adults were asked which group is more helpful when they need certain types of information or support: health professionals like doctors and nurses or peers like fellow patients, friends, and family.

The pattern of responses was pretty clear: When the item involved technical issues related to a health issue, professionals held sway. When the item involved more personal issues of how to cope with a health issue or get quick relief, then non-professionals were preferred by most patients.

Many people find the internet to be a valuable tool, whether they are using it to search for a quick answer or gain a deeper understanding of a new treatment option or prescription. The internet is also, as this study shows, a way to tap into our instincts to gather together, help other people, and be helped ourselves.

National telephone survey

The questionnaire, including topline results, and full methodology are available for download as a PDF.

All numerical results in this report are based on data from telephone interviews conducted by Princeton Survey Research Associates International between August 9 and September 13, 2010, among a sample of 3,001 adults, age 18 and older.  Interviews were conducted in English and Spanish.  For results based on the total sample, one can say with 95% confidence that the error attributable to sampling is plus or minus 2.5 percentage points.  For results based on internet users (n=2,065), the margin of sampling error is plus or minus 2.9 percentage points.  In addition to sampling error, question wording and practical difficulties in conducting telephone surveys may introduce some error or bias into the findings of opinion polls.

A combination of landline and cellular random digit dial (RDD) samples was used to represent all adults in the continental United States who have access to either a landline or cellular telephone. Both samples were provided by Survey Sampling International, LLC (SSI) according to PSRAI specifications.  The landline sample for this survey was designed to generalize to the U.S. adult population and to oversample African Americans and Hispanics. To achieve these objectives in a cost effective manner, the design uses standard list-assisted random digit dialing (RDD) methodology, but telephone numbers are drawn disproportionately from telephone exchanges with higher than average density of African-American and/or Hispanic households. The cellular sample was not list-assisted, but was drawn through a systematic sampling from dedicated wireless 100-blocks and shared service 100-blocks with no directory-listed landline numbers.

New sample was released daily and was kept in the field for at least five days. The sample was released in replicates, which are representative subsamples of the larger population. This ensures that complete call procedures were followed for the entire sample.  At least 7 attempts were made to complete an interview at a sampled telephone number. The calls were staggered over times of day and days of the week to maximize the chances of making contact with a potential respondent. Each number received at least one daytime call in an attempt to find someone available. For the landline sample, half of the time interviewers first asked to speak with the youngest adult male currently at home. If no male was at home at the time of the call, interviewers asked to speak with the youngest adult female. For the other half of the contacts interviewers first asked to speak with the youngest adult female currently at home. If no female was available, interviewers asked to speak with the youngest adult male at home. For the cellular sample, interviews were conducted with the person who answered the phone. Interviewers verified that the person was an adult and in a safe place before administering the survey. Cellular sample respondents were offered a post-paid cash incentive for their participation. All interviews completed on any given day were considered to be the final sample for that day.

Disproportionate sampling and non-response in telephone interviews can produce biases in survey-derived estimates. The dataset was weighted in two stages.  The first stage of weighting corrected for the disproportionate landline sample design and also accounted for the overlapping landline and cellular sample frames as well as different probabilities of selection associated with the number of adults in the household. The second stage of weighting matched overall sample demographics to population parameters. The demographic weighting parameters are derived from a special analysis of the most recently available Census Bureau’s March 2009 Annual Social and Economic Supplement. This analysis produces population parameters for the demographic characteristics of adults age 18 or older. These parameters are then compared with the sample characteristics to construct sample weights. The weights are derived using an iterative technique that simultaneously balances the distribution of all weighting parameters.

The response rate for the landline sample was 13.6 percent. The response rate for the cellular sample was 17.0 percent.