Forty-five percent of U.S. adults report that they live with one or more chronic conditions, such as high blood pressure, lung conditions, diabetes, heart disease, or cancer. They are more likely than other adults to be older, to have faced a medical emergency in the past year, and, as other studies have shown, to contribute to the explosion of health care costs in the U.S.¹

In this study, the Pew Research Center explores how adults with chronic conditions gather, share, and create health information, both online and offline.

We provide evidence that many people with serious health concerns take their health decisions seriously—and are seriously social about gathering and sharing information, both online and offline.

72% of U.S. adults living with chronic conditions use the internet

People living with chronic conditions are significantly less likely than other adults to have internet access: 72%, compared with 89% of adults who report no chronic conditions.

This is partly tied to the fact that as a group they are older than the general population and have less education – both of which are associated with being offline. Still, the Pew Research Center has identified what we call a “diagnosis difference.” Holding other variables constant (including age, income, education, ethnicity, and overall health status), living with a chronic disease has an independent, negative effect on someone’s likelihood to use the internet.

Living with a chronic condition is independently associated with key health-related activities

If someone living with a chronic condition has access to the internet, however, the diagnosis difference is tied to certain online behaviors. When controlling for age, income, education, ethnicity, and overall health status, internet users living with one or more conditions are more likely than other online adults to:

• Gather information online about medical problems, treatments, and drugs.
• Consult online reviews about drugs and other treatments.
• Read or watch something online about someone else’s personal health experience.

People living with chronic conditions are more likely than others to fact check with a medical professional what they find online

Thirty-one percent of U.S. adults living with chronic conditions say they have gone online specifically to try to figure out what medical condition they or someone else might have. They are more likely than other “online diagnosers” to talk with a clinician about what they find:

• 60% of online diagnosers living with chronic conditions say they talked with a medical professional about the information they found online, compared with 48% of online diagnosers who report no conditions.
• About half of online diagnosers living with chronic conditions say that a clinician confirmed their suspicions, either completely or in part. About one in five say that a clinician offered a different opinion.

Many of those tracking health indicators report it can have a significant impact

People living with chronic conditions are significantly more likely than other adults to track weight, diet, exercise, or health indicators like blood pressure, blood sugar, sleep patterns, or headaches. Eighty percent of adults living with two or more conditions do so, compared with 70% of those living with one condition and 61% of those who report no chronic conditions.

Trackers living with chronic conditions are also more likely than others to take formal notes, to track on a regular basis, and to share their notes with other people, particularly clinicians. Fully 72% of trackers living with chronic conditions say that keeping notes of any kind has had an impact on their health routine or the way they care for someone else, compared with 55% of trackers who report no conditions.

About this study

The results reported here come from a nationwide survey of 3,014 adults living in the United States. Telephone interviews were conducted by landline (1,808) and cell phone (1,206, including 624 without a landline phone). The survey was conducted by Princeton Survey Research Associates International. Interviews were done in English and Spanish by Princeton Data Source from August 7 to September 6, 2012. Statistical results are weighted to correct known demographic discrepancies. The margin of sampling error for the complete set of weighted data is ±2.4 percentage points. In this survey there are 1,498 respondents who are living with one or more chronic health conditions. Margin of error for results based on that group is ±3 percentage points.

The Pew Research Center is a nonprofit “fact tank” that provides information on the issues, attitudes and trends shaping America and the world. The Center is nonpartisan and takes no position on policy issues. Support for the Center is provided by the Pew Charitable Trusts.

Support for this study was provided by the California HealthCare Foundation, an independent philanthropy committed to improving the way health care is delivered and financed in California.

Additional analysis and editorial guidance was provided by Kristen Purcell and Lee Rainie.

An extensive appendix contains stand-alone analysis of each group included in the survey: the general population, adults living with high blood pressure, adults living with lung conditions, adults living with diabetes, adults living with heart conditions, adults living with cancer, and adults living with other chronic health conditions. Since one in five U.S. adults is living with two or more conditions, we cannot compare the groups.

The diagnosis difference

Forty-five percent of U.S. adults report that they live with one or more chronic conditions, such as high blood pressure and diabetes, but also less-common conditions like lupus and cancer.⁸ They are more likely than other adults to be older, to have faced a medical emergency in the past year, and, as other studies have shown, to contribute to the explosion of health care costs in the U.S.⁹

This national survey by the Pew Research Center, supported by the California HealthCare Foundation, explores how adults with chronic conditions gather, share, and create health information, both online and offline.

Chronic disease is statistically associated with advanced age and lower education, which are also strongly associated with low internet access, and indeed, that connection is reflected in this study. Fully 75% of U.S. adults age 65 and older are living with a chronic condition, for example, and that age group is the least likely to use the internet.¹⁰

However, chronic disease seems to play an independent role. Logistic regression analysis indicates a “diagnosis difference” that is tied to several aspects of health care and technology use.  Holding other variables constant (including age, income, education, ethnicity, and overall health status), the fact that someone has a chronic condition is independently associated with being offline.

The diagnosis difference cuts another way, too.  This study provides evidence that many people with serious health concerns take their health decisions seriously—and are seriously social about gathering and sharing information, both online and offline.

For example, the last time they had a serious health episode, people living with chronic conditions were more likely than the general population to tap into the help offered by health professionals, friends and family, and peer patients. Holding other key variables constant, living with a chronic condition increases the likelihood that someone will seek advice, information, or support from all three sources.

In addition, internet users living with one or more conditions are more likely than other online adults to:

• Gather information online about medical problems, treatments, and drugs.
• Consult online reviews about drugs and other treatments.
• Read or watch something online about someone else’s personal health experience.

Those observations hold when controlling for age, income, education, ethnicity, and overall health status—all of which are also associated with doing health-related activities online. This echoes the Pew Research Center’s previous work in this area, which showed that, once someone is online, having a chronic disease increases the probability that they will take advantage of social media to share what they know and learn from their peers.¹¹ Other examples of the diagnosis difference are noted throughout the report.

The prevalence of high blood pressure, lung conditions, heart conditions, diabetes, cancer, and “other chronic conditions”

To define this population, we asked people if they are now living with the following health problems or conditions:

• 25% of U.S. adults say they are living with high blood pressure.
• 13% of U.S. adults say they are living with asthma, bronchitis, emphysema, or other lung conditions.
• 11% of U.S. adults say they are living with diabetes.
• 7% of U.S. adults say they are living with heart disease, heart failure, or heart attack.
• 3% of U.S. adults say they are living with cancer.
• 16% of U.S. adults say they are living with any other chronic problem or condition.¹²

We find that one in four U.S. adults (24%) say they are living with one condition. One in five U.S. adults (20%) say they are living with two or more chronic health conditions. This second group is considerably different from the rest of the population in terms of age, education, health status, and technology use.

The table below shows the distribution of health and disease in the population of U.S. adults as a whole.

When controlling for age, income, education, ethnicity, and overall health rating, having at least one chronic condition significantly increases the likelihood that someone will have faced a serious medical crisis, gone to the emergency room or been hospitalized unexpectedly, or experienced a significant change in their physical health in the past 12 months. For example, 26% of adults living with two or more conditions say they faced a serious medical emergency in the past year, compared with 12% of those who have one condition and just 4% of adults who report no chronic conditions.

People living with chronic conditions are also more likely to be caring for other people. Forty-two percent of U.S. adults living with one or more chronic conditions are currently caring for a loved one, either an adult or child. By comparison, 37% of U.S. adults who do not have a chronic condition are caregivers¹³.

Lower uptake of technology among people living with chronic conditions

People living with chronic health conditions continue to lag behind other U.S adults when it comes to information and communications technology adoption. Of those who are living with chronic health conditions, 72% say they have access to the internet. By comparison, 89% of those who report no significant health problems say they have access.

This 17-point gap echoes previous studies. In 2008, for example, Pew Research Center data showed that 62% of adults living with one or more chronic conditions used the internet, compared with 81% of adults reporting no health problems, a 19-point gap.¹⁴

Pew Research Center studies also show that education and age are strongly correlated with having internet access.  Yet when age and education are held constant, living with a chronic disease independently increases the likelihood that someone will not have internet access.  

The more conditions people are managing, the less likely they are to have internet access: 80% of adults living with one condition have internet access, compared with 61% of those living with 2+ conditions.

There is also a gap when it comes to cell phones:  78% of U.S. adults living with chronic health conditions said they own a cell phone at the time of the survey, compared with 91% of those who report no conditions. This ratio has not changed significantly since 2008, when 76% of adults living with chronic conditions reported that they own a cell phone, compared with 89% of those who do not have any chronic conditions.

Living with a chronic condition is not a significant factor in predicting someone’s likelihood to own a cell phone. Statistical analysis shows that the gap is better explained by the fact that people with significant health challenges are more likely to be older, living in lower-income households, and reporting a lower level of formal education. Age, income, and education level are all strongly correlated with cell phone ownership.

Clinicians are a central resource, but friends, families, and peers play important roles, too

People living with chronic conditions are more likely than other adults to tap into every health information resource available to them, online and offline. When asked to think about the last time they had a serious health issue and to whom they turned for help:

• 81% of all adults living with one or more chronic conditions got information, care, or support from a doctor or other health care professional.
• 65% of all adults living with one or more chronic conditions got information or support from friends and family.
• 27% of all adults living with one or more chronic conditions got information or support from others who have the same health condition.

By comparison, people who report having no chronic conditions are significantly less likely to turn to each of these sources:

• 62% of all adults who report no chronic conditions got information, care, or support from a doctor or other health care professional.
• 56% of all adults who report no chronic conditions got information or support from friends and family.
• 23% of all adults who report no chronic conditions got information or support from others who have the same health condition.

When controlling for other demographic characteristics, such as age, education, ethnicity, and overall health rating, having a chronic condition significantly increases the likelihood someone got information or support from each of the three sources.

People who report having two or more conditions are more likely than those who report one condition to have called on a clinician or peer patient, as shown in the following table:

Once online, people living with chronic conditions are likely to access health information of all kinds

Seven in ten internet users, no matter their diagnosis, say they have looked online for health information in the past year. Internet users living with multiple chronic conditions are significantly more likely than other internet users to have looked online for information about a specific disease or medical problem, a certain medical treatment, and drugs, as shown in the table below:

Eight in ten U.S. adults who have sought health information online say they began their last inquiry at a general search engine like Google, Bing, or Yahoo. This has been a bedrock finding of the Pew Research Center, dating back to our first health survey in 2000, underlining the centrality of search in Americans’ online lives.

Internet users living with two or more chronic conditions are somewhat less likely than those who report no conditions to say this however: 68%, compared with 80%. Internet users who report two or more chronic conditions are more likely than other people to say they started their most recent health search at a site that specializes in health information, like WebMD: 20% say that, compared with 12% of internet users who report no conditions.

In order to get a better idea of how people are navigating health online, we asked respondents to tell us in their own words which sites or services they use. Federal government health websites were popular among those living with chronic conditions, such as PubMed, CDC.gov, Medline, HHS.gov, and Medicare.gov. Health insurance websites, clinicians’ websites, as well as some specific services like iTriage were also frequently mentioned by people living with chronic conditions.

Even search itself turns out to be a social activity. Half of all health searches online are performed on behalf of someone else, including among people living with chronic conditions who probably have quite a few of their own concerns. This is another bedrock finding of the Pew Research Center, dating to the year 2000, when we first began measuring Americans’ use of the internet to gather health information. Fifty-three percent of online health information seekers living with one or more chronic conditions report that the last time they went online for health information it was related, at least in part, to someone else’s medical situation. Forty-three percent of health information seekers living with chronic conditions say their last inquiry was about their own concerns, compared with 36% of those who report no conditions.

Few pay for online content

Thirty percent of online health information seekers living with chronic conditions say they have been asked to pay for access to something they wanted to see online. Eighty percent of those who encountered a pay wall say they tried to find the information somewhere else; 17% gave up; and 2% paid the fee.

By comparison, 23% of online health information seekers who report no chronic conditions say they have been asked to pay for access to information they wanted to see – a significant difference compared with those living with chronic conditions. Again, the vast majority (86%) say they did not pay, but rather tried to find the same information somewhere else. Ten percent gave up and 3% paid.

Sharing stories, finding other people who share the same health concerns

The internet enables people to not only gather health information, but to share it and even create it. We find that, in general, internet users living with chronic conditions are about as likely as those who report no health issues to say they have taken part in social activities related to health, as shown in the table below.

Internet users living with chronic conditions stand out from their peers in noteworthy ways: sharing questions online and reading or watching other people’s health stories online. Of those who have posted health questions online, eight in ten say they were hoping to reach a general audience of friends and other internet users, compared with just one in ten who say they hoped to get feedback from a health professional. Peer advice trumps professional advice in certain situations, as previous research has shown.⁹

When we control other demographic factors, such as age, income, education, race, and overall health rating, we find that having a chronic condition significantly increases the likelihood that someone will take part in any of the following activities: downloading forms, posting comments, reading or watching someone else’s commentary or experience about health, and signing up for email updates.

People living with chronic conditions are more likely than others to fact check what they find online with a medical professional

Thirty-one percent of U.S. adults living with one or more chronic conditions say they have gone online specifically to try to figure out what medical condition they or someone else might have. By comparison, 38% of U.S. adults who report no chronic conditions say they have done so. This difference is related to the fact that people living with chronic conditions are less likely than other adults to have internet access. When we look only at internet users, the two groups are equally likely to say they have gone online for a diagnostic check.

Among online diagnosers, people living with one or more chronic conditions are more likely than others to say that the information they found online lead them to think that it needed the attention of a doctor or other medical professional: 53%, compared with 41% of those living with no chronic conditions.

Among online diagnosers, people living with chronic conditions are also more likely to say they talked with a medical professional about the information they found online: 60% of online diagnosers with one or more chronic conditions did so, compared with 48% of those who report no conditions. And 48% of online diagnosers with one or more chronic conditions say that a medical professional confirmed their suspicions, either completely or in part. Twenty-one percent of online diagnosers with one or more conditions say a medical professional offered a different opinion, in contrast to the information found online. Twenty-seven percent of online diagnosers with one or more conditions say they did not visit a medical professional in order to get their opinion.

Again, the diagnosis difference likely plays a role: People with serious health concerns are likely to take their online research seriously.

Health care reviews are not a mainstream information source

People who consult online health care reviews are in the minority—and the numbers shrink even more when we ask if people have contributed to such reviews. Expressed as a percentage of the total population, for example, just 11% of U.S. adults living with one or more chronic conditions have consulted online rankings or reviews of hospitals or other medical facilities. This is the same percentage of U.S. adults who report no conditions who have looked online at hospital rankings and reviews.

The table below shows the percentages of internet users in each group who have consulted or contributed to online rankings or reviews of health services or treatments.

People with chronic conditions are highly likely to track their symptoms

Clinical research shows that tracking symptoms and other indicators is a low-cost, effective health intervention.¹⁰ This is the first national survey measuring the extent of tracking among the people most likely to benefit—those living with chronic health conditions.

Seven in ten U.S. adults living with one chronic condition and fully 80% of people living with two or more conditions track a health indicator, for themselves or for someone else. By comparison, 61% of adults living with no conditions track some aspect of health. When controlling for age, income, education, ethnicity, and overall health status, living with chronic conditions increases the probability that someone will track a health indicator.

Education and age also play a role. Being college-educated increases someone’s likelihood to track their weight, diet, or exercise routine. College-educated adults, however, are less likely to track other health indicators like blood pressure, blood sugar, sleep patterns, or headaches, possibly because they are less likely to be living with a chronic disease or other health condition. Being younger (between the ages of 18 and 39) is also independently associated with a lower likelihood to track other health indicators.

Health trackers living with chronic conditions are likely to say they use formal means, such as paper and pencil or a medical device, to take note of changes:

• 41% of health trackers who report having one or more chronic conditions use pencil and paper.
• 14% of this group uses a medical device such as a glucometer.
• 4% of this group uses an app or other tool on their mobile device or phone.
• 4% of this group uses a computer program, like a spreadsheet.
• 1% of this group uses a website.

However, informal means are also popular: 43% of health trackers living with one or more chronic conditions say they just keep track in their heads.

Previous research shows that people who use more formal tracking methods are more likely to do so on a regular basis and more likely to say it has had an impact on their health.¹¹

Indeed, 50% of trackers living with one or more conditions say they track on a regular basis, compared with 43% of trackers who report no conditions (a statistically significant difference). The gap widens among those with multiple conditions and when looking at the most frequent interval we asked about: 28% of trackers living with two or more conditions say they do so daily, compared with 11% of those with no conditions.

Forty-five percent of trackers living with one or more conditions say they keep track of health indicators only when something comes up or changes. By comparison, 54% of trackers who report no conditions say they keep track episodically.

Trackers living with chronic conditions are also more likely than others to say they share their notes with other people:

• 39% of trackers living with one or more condition share their notes, compared with 30% of those who report no conditions.
• Of that group, two-thirds living with chronic conditions share tracking notes with a health or medical professional: 64% do so, compared with 37% of those who report no conditions.

Seventy-two percent of trackers living with one or more conditions say tracking has had an impact on their health or the health of someone they care for, compared with 55% of trackers who report no conditions.

Half of trackers living with chronic conditions (51%) say that tracking has changed their overall approach to their own or someone else’s health. Forty-eight percent of trackers living with chronic conditions say it has led them to ask a doctor new questions or to get a second opinion. Forty-three percent of trackers living with chronic conditions say it has affected a health care decision. Comparisons with those who report no chronic conditions are displayed in the table below:

Appendix A: General population

Appendix B: High Blood Pressure

Appendix C: Lung Conditions

Appendix D: Diabetes

Appendix E: Heart Conditions

Appendix F: Cancer

Appendix G: Other Chronic Conditions

About this study

The 2012 Health Survey, sponsored by the Pew Research Center and the California HealthCare Foundation, obtained telephone interviews with a nationally representative sample of 3,014 adults living in the United States. Telephone interviews were conducted by landline (1,808) and cell phone (1,206, including 624 without a landline phone). The survey was conducted by Princeton Survey Research Associates International. Interviews were done in English and Spanish by Princeton Data Source from August 7 to September 6, 2012. Statistical results are weighted to correct known demographic discrepancies. The margin of sampling error for the complete set of weighted data is ±2.4 percentage points.

Details about design and data collection procedures, as well as survey results, can be found at:

https://alpha.pewresearch.org/pewresearch-org/internet/Shared-Content/Data-Sets/2012/September-2012–Health-Tracking-(prelim).aspx