March 24, 2010

Chronic Disease and the Internet

Health Information

Half of U.S. adults living with chronic disease are e-patients.

Looking at the population as a whole, 51% of American adults living with chronic disease have looked online for any of the health topics we ask about, such as information about a specific disease, a certain medical procedure, prescription or over-the-counter drugs, or health insurance.

By comparison, 66% of adults who report no chronic conditions use the internet to gather health information and 44% of adults living with two or more conditions do so. (Throughout the remainder of the report, the term “e-patient” is used to describe an internet user who has looked online for health information.)

Lack of internet access, not lack of interest in the topic, is the primary reason for the gaps. In fact, statistical analysis finds that, once online, having a chronic disease has a positive effect on someone’s propensity to look online for health information. Education and type of access (broadband or wireless) are still the strongest predictors for seeking health information online but the more diseases an internet user reports, the more likely they are to seek advice online, independent of all other demographic factors.

The motivations to go online for health information are probably as varied as the topics people research. People living with chronic disease are likely to be managing multiple conditions, filling multiple prescriptions, and visiting multiple doctors.19 In fact, a Harris Interactive study found that 17% of people living with chronic conditions reported receiving conflicting information from providers and 18% reported having duplicate tests or procedures performed.20 And again, the internet can be an information vending machine for some users and a powerful communications resource for others, depending on the nature of their illness or their level of interest in a certain topic.

Health topics

There is almost a universality of interest in the following health topics, no matter someone’s health status. Chronic disease increases someone’s propensity to look for information about many of these topics, though not all.  In addition, information seeking for many of these topics is driven by key demographic factors such as being female, holding a college degree, having broadband at home.  These influences are noted in the text below.

Health topics

Specific disease or medical problem

Overall, 69% of internet users living with chronic disease report that they have looked online for information about a specific disease or medical problem, compared with 65% of internet users who report none of the chronic conditions named in the survey. This does not represent a significant difference between the two groups. However, among internet users, being female, having a college degree, or having home broadband access increases the likelihood to look for this type of information online. Chronic disease also slightly increases the probability that an internet user will look online for information about a specific disease or medical problem.

One e-patient wrote about receiving an unexpected diagnosis and needing specific information, on her own time: “[The] doctor just called on the phone and said I had it and did I have any questions. I was in too much shock at that moment and was crying and emotional so I couldn’t think of anything to ask. Later, I got on the internet and went to many sites that gave me very good and helpful information. My fears were calmed somewhat. I am still confused about the disease and have many questions so I have scheduled an appointment with the doctor.”

Certain medical treatment or procedure

55% of internet users living with chronic disease report that they have looked online for information about a certain medical treatment or procedure, compared with 54% of internet users who report none of the chronic conditions named in the survey. Again, this does not represent a meaningful difference, but statistical analysis finds that being female, having a college degree, having home broadband access, or living with chronic disease all increase an internet user’s likelihood to look online for this type of information.

One e-patient wrote about her motivation to find out everything she could about her condition: “If I had not done my own research then I would have not known to request the surgery that saved my hip. I learned early to do my own research and not rely on the doctor. By my own family doctor’s admission, I knew more than he did by the time I was done.”

Exercise or fitness

49% of internet users living with chronic disease report that they have looked online for information about exercise or fitness, compared with 54% of internet users who report none of the chronic conditions named in the survey. This gap represents a significant difference between the two groups. In addition, being young, non-white, female, or college-educated are each predictors for doing online research about this type of information.

Those chronically-ill internet users who do search for this type of information online can find valuable insights to help them manage their illness. One respondent wrote that, rather than finding any new treatments for her condition during her most recent foray online, she found new exercises to try to alleviate both her physical symptoms and her mental state: “I am under a lot of stress and don’t know what to do about it.”

Prescription or over-the-counter drugs

48% of internet users living with chronic disease report that they have looked online for information about prescription or over-the-counter drugs, compared with 43% of internet users who report none of the chronic conditions named in the survey. This is the one topic which is significantly more popular among internet users living with chronic disease than among non-chronic internet users, which is in line with studies conducted by Manhattan Research.21 Statistical analysis shows that the presence of chronic disease has an independent effect on someone’s likelihood to seek information about drugs – the greater the number of diseases reported, the greater the interest in this type of information. In addition, a college degree, broadband, or being female are each associated with a propensity to do online research about prescription or over-the-counter drugs.

Many respondents to the qualitative survey report looking up new prescriptions, either for themselves or on behalf of a loved one. Typical of this theme is the e-patient who wrote, “I always look up new prescriptions and check if new pills will interact with the many that I am already taking.”

Doctors or other health professionals

43% of internet users living with chronic disease report that they have looked online for information about doctors or other health professionals, compared with 48% of internet users who report none of the chronic conditions named in the survey. This represents a statistically significant difference between the two groups. In addition, among internet users, being female, having a college degree, or having home broadband access increases the likelihood to look online for information about doctors and other health professionals.

For those chronically ill internet users who do look for this information on the internet, shopping for a doctor online is still a new concept for many people. The information available about health professionals fell short of expectations for one respondent, but she does have a wish list for the future: “I would love it if doctors were rated and blogged about so the majority of patients wouldn’t end up with bad doctors or that doctors would try harder because they know that they are being reviewed.”

Health insurance

37% of internet users living with chronic disease report that they have looked online for information related to health insurance, including private insurance, Medicare or Medicaid, the same percentage as internet users who report none of the conditions named in the survey. Once again, being female, having a college degree, or having home broadband access increases an internet user’s likelihood to look online for information about health insurance.

None of the respondents to the qualitative survey mentioned using the internet to get information about health insurance (it is likely that those living with chronic illness are in touch with their insurance providers on a fairly regular basis by telephone or mail, and are already deeply familiar with their plan and coverage).  Nearly all of the responses who did mention health insurance expressed frustration, some using language that cannot be printed here.

Hospitals

38% of internet users living with chronic disease report that they have looked online for information about hospitals or other medical facilities, the same percentage as those who report none of the chronic conditions named in the survey. Statistical analysis shows that the presence of disease in someone’s life has an independent, positive effect on their likelihood to look online for this type of information. Being female, having a college degree, or having home broadband access increases an internet user’s likelihood to look online for this type of information.

One respondent told about how, before seeking treatment, she searched online for a list of local hospitals and reviewed the doctors listed on each website. As she writes, “Some were eliminated based on past negative experiences. I eventually chose a hospital with which I had previous excellent care.”

Alternative medicine

38% of internet users living with chronic disease report that they have looked online for information about alternative treatments or medicines, compared with 33% of internet users who report none of the chronic conditions named in the survey. Statistical analysis shows that having wireless access is strongly associated with a propensity to look online for this type of information. Having a college degree, being female, or living with chronic disease are also associated, but to a lesser degree, with looking online for information about alternative treatments.

Many chronic e-patients wrote about their online research related to alternative treatments. The following is a typical comment shared in the qualitative survey: “I have learned other ways to keep my blood pressure in control, e.g. deep breathing and relaxation, so I don’t depend entirely on drugs.”

Mental health

28% of internet users living with chronic disease report that they have looked online for information about depression, anxiety, stress or mental health issues, the same percentage as those who report none of the chronic conditions named in the survey. Statistical analysis shows that, among internet users, as the number of chronic diseases someone has increases, the more likely they are to seek information online about mental health issues, independent of other factors. Being young or being female are also associated a propensity to do this type of research online.

Coping with mental health issues was a theme threaded through many of the online essays, including this quote: “I love to be able to talk to others who know how bad depression can be from their own experiences.”

Weight loss

35% of internet users living with chronic disease report that they have looked online for information about how to lose weight or how to control their weight, compared with 33% of internet users who report none of the chronic conditions named in the survey. Being young, non-white, female, or college-educated are each predictors for doing online research about this type of information, as is having wireless internet access.  Chronic illness is not correlated with seeking this type of information. 

One e-patient wrote about how she hopes to lose weight and lower her high blood pressure but her diet searches have been in vain: “All I ever get back or find is ‘stay away from salt.’ Well, I don’t use salt and I watch what I buy that has salt already in it. All I want is a diet to follow where I’m not eating like a rabbit and can enjoy eating.”

Another e-patient living with diabetes wrote, “I have a hard time fighting to remember to not eat carbs.  [Certain websites] have been extremely valuable to keeping me on line and always coming back to my goals.”

Experimental treatments

22% of internet users living with chronic disease report that they have looked online for information about experimental treatments or medicines, compared with 19% of internet users who report none of the chronic conditions named in the survey. Statistical analysis shows that as the number of chronic diseases someone has increases, the more likely they are to seek information online about experimental treatments, independent of other factors.

One respondent shared that she found herself caught between her medical doctor and her chiropractor, who each dismissed the other’s advice about experimental treatments. She writes, “I was able to find how the two treatments would be complementary if performed correctly. Once I gave my doctors this information they both felt more comfortable with the other doctor’s way of treating me.”

Immunizations for travel

10% of internet users living with chronic disease report that they have looked online for information about how to stay healthy on a trip overseas (such as immunizations and shots), compared with 13% of internet users who report none of the chronic conditions named in the survey. Having a wireless connection, being non-white, or living in a lower-income household each increase an individual’s propensity to look online for this type of information.

None of the respondents to the qualitative survey wrote about this health topic.

Any other health topic

27% of internet users living with chronic disease report that they have looked online for information about any other health issue, not included in our list, compared with 26% of internet users who report none of the chronic conditions named in the survey.

This question was included as a catch-all to be sure everyone who has done online health research is included in the analysis. The essays collected in the qualitative surveys are a window into the variety of health information sought online from home remedies to nutritional information to smoking cessation tips.

Few are engaged daily or even weekly with online health resources.

The vast majority of internet users living with chronic disease (83%) look online for health information. However:

  • 81% of internet users living with chronic disease say they go online and do something related to health less often than once a week.
  • 10% say they do so once a week.
  • 5% say they do so every few days.
  • Only 3% say they go online and do something related to health once a day or more.

These findings match the habits of the general population of internet users: 81% of all internet users say they go online and do something related to health less often than once a week.

Similarly, Harris Interactive has found that 25% of internet users “often” look for information online about health topics, compared with 38% of internet users who “sometimes” look and 36% of internet users who “hardly ever” or “never” look online for health information.22

It appears that online health research is generally conducted episodically, on a need-to-know basis. People living with chronic disease, much like everyone else, are busy working and socializing, hoping to avoid the need to investigate a new diagnosis or treatment. Frequency is not necessarily an indication – in either direction – for the quality of someone’s engagement with online health resources.

Chronic disease requires a focus on one’s own health questions

Not surprisingly, e-patients living with one or more chronic diseases are often focused on their own concerns: 51% say their last online health inquiry centered on their own medical situation. Thirty-four percent say their last health search focused on someone else’s concerns. Eight percent volunteer that their last inquiry was on behalf of both themselves and someone else.

By comparison, e-patients who report none of the chronic diseases recorded in this survey are likelier to say their last health search focused on someone else’s concerns. Thirty-seven percent say they were looking on behalf of themselves, 47% say they were looking on behalf of another person, and 10% volunteer that the last search was for both themselves and someone else.

Statistical analysis bears out this observation. If someone is dealing with a chronic disease they are more likely than other e-patients to research their own questions, regardless of their age, education level, or other demographic variables.

Health professionals dominate the information mix.

More than any other group, people living with chronic disease remain strongly connected to offline sources of medical assistance and advice.

When asked, “Now thinking about all the sources you turn to when you need information or assistance in dealing with health or medical issues, please tell me if you use any of the following sources…”

  • 93% of adults living with chronic disease ask a health professional, such as a doctor.
  • 60% ask a friend or family member.
  • 56% use books or other printed reference material.
  • 44% use the internet.
  • 38% contact their insurance provider.
  • 6% use another source not mentioned in the list. 

By comparison, adults who report no chronic conditions are significantly more likely to turn to the internet as a source of health information and less likely to contact their insurance provider:

  • 83% of adults who say they have no chronic conditions ask a health professional, such as a doctor, when they need medical assistance or information.
  • 64% ask a friend or family member.
  • 60% use the internet.
  • 52% use books or other printed reference material.
  • 29% contact their insurance provider.
  • 5% use another source not mentioned in the list. 

Statistical analysis shows that living with a chronic disease has a significant, independent effect on someone’s likelihood to stick with offline sources. In fact, although other factors, such as advanced age, are associated with a reliance on offline health resources, having a chronic disease is the strongest predictor of all the variables included in the analysis.

The qualitative survey yielded many stories about how the internet is a supplement, not a substitute, for the care and advice people receive from health professionals. One breast cancer survivor wrote about how she uses the internet to prepare for appointments: “I was never great about asking my doctor the questions that needed to be asked. Now I ask away and never go without asking what’s important about my health and anything I just want to know.”

Other research bears out this finding. Over the course of three national surveys conducted by the National Cancer Institute, researchers found that “the public’s trust in physicians as their preferred source of health information has remained high and, if anything, increased from 2002 to 2008.” When respondents were asked where they went first for cancer information, however, the internet was their top choice. In fact, even as trust in physicians remained steady and trust in the internet decreased, the use of the internet as a first stop for respondents seeking health information rose over time.23

There is also evidence that people living with chronic disease are discriminating about what sites they visit, when they do go online. A 2006 survey by the Pew Internet Project found that e-patients living with chronic conditions were also more likely than other internet users to go to trusted sites instead of relying on a general search engine to answer their questions.24

In the current study, one e-patient wrote, “I hesitate to say ‘internet’ because I am very picky on the resources I use.  I prefer using websites that are written for professionals dealing with the disease because they don’t ‘talk down’ to me.”

Another e-patient wrote, “I send links of relevant articles to my friends and/or family and have many discussions with my husband and 19 year old son… I am a pretty good diagnostician.  However, the best advice I give is ‘You should see a doctor about that!’”

People living with chronic conditions have good reason to be careful about health information: the consequences of missed opportunities can be very serious.  One respondent told about how, in 2003, she heard disturbing news about a medication she was taking. She went to a major disease-specific, consumer-oriented website and found nothing about it. As she wrote, “Now the drug comes with warnings about heart related issues. Would have been nice to know about those things years ago when they kept denying that there was a problem.”

Once they find health information online, most talk it over with friends and family.

Most internet users, once they find health information online, usually talk with someone about it, regardless of their health status. Two-thirds of e-patients living with chronic disease (66%) say they usually talk with a friend, a spouse or partner, a family member, a co-worker, or a medical professional. The pattern is the same among e-patients who report no chronic disease.

One respondent to the online survey wrote, “I research everything and then discuss with my doctor and family who have to deal with my condtion.” Another shared that, because of her online research, “I am better able to give intelligent answers to my doctor’s questions on my health generally.”

Cite this publication: Susannah Fox and Kristen Purcell. “Chronic Disease and the Internet.” Pew Research Center, Washington, D.C. (March 24, 2010) http://www.pewinternet.org/2010/03/24/chronic-disease-and-the-internet/, accessed on July 22, 2014.

  1. Anderson, 2007.
  2. Harris Interactive, "Chronic Illness and Caregiving" (2000).
  3. Manhattan Research, "The Online Pharmaceutical Information-Seeking Landscape."
  4. Harris Interactive's Healthcare News, Volume 8, Issue 8, August 2008 (PDF).
  5. Bradford W. Hesse, Richard P. Moser, and Lila J. Rutten, "Surveys of Physicians and Electronic Health Information." (New England Journal of Medicine: 2010 Mar 4;362(9):859-60.)
  6. Susannah Fox, "E-patients With a Disability or Chronic Disease." (Pew Internet Project: October 8, 2007).