March 24, 2010

Chronic Disease and the Internet

Impact of Online Health Resources

About one in six online health inquiries have a major impact on a chronic e-patient’s health care or the way they care for someone else.

When asked, “Did the health information you found in the last time online have a major impact on your own health care or the way you care for someone else, a minor impact, or no impact at all?”

  • 16% of e-patients living with chronic disease say their most recent inquiry had a major impact.
  • 41% say it had a minor impact.
  • 39% say their most recent inquiry had no impact.

By comparison, 11% of e-patients who report no chronic conditions say their last online health inquiry had a major impact on their own care or the way they care for someone else. The two groups come out even overall: 57% of both groups, regardless of their health status, say their last online health inquiry had any impact, major or minor.

Indeed, the following comment succinctly illustrates the disappointment of many people regarding online health resources: “The last time I went online for health information, I did not find the information I needed.” Another respondent wrote about how online health research may not bring earth-shattering revelations, but plays an important role in his life: “The information didn’t change anything I am doing, but it made me feel more educated.”

However, statistical analysis reveals that living with chronic disease does have a fairly strong positive effect on someone’s likelihood to report that online health information has made an impact on their care or the way they care for someone else.

One e-patient wrote, in reference to the impact of her last online search for health information, “It let me know I wasn’t alone in my pain or diagnosis. It gave me a place to share and be open….to ask questions…to get and to give support.”

Another e-patient shared that her last online health inquiry had a major impact on her well-being: “I was having pretty severe side effects from one particular drug I was taking but it was working very well in controlling my symptoms. However, while pain control was good, my fatigue was crushing. I did online searching to see what others have tried in that regard and used that information to visit with my doctor. Together we found another medication that helped which also did not create severe side effects. I find I take a more proactive approach to my healthcare because of what I am able to find out before a doctor visit.”

Of the e-patients living with chronic disease who say their most recent query had an impact, either major or minor:

  • Two-thirds say the information found online affected a decision about how to treat an illness or condition.
  • Half say it changed the way they cope with a chronic condition or manage pain.
  • Half say it changed their overall approach to maintaining their health or the health of someone they help take care of.
  • Half say it lead them to ask a doctor new questions, or to get a second opinion from another doctor.
  • Half say it changed the way they think about diet, exercise, or stress management.
  • One-third say it affected a decision about whether to see a doctor.

These findings match the responses of the general population with one notable, but unsurprising, exception: pain or chronic condition management. Thirty percent of e-patients who report no chronic conditions say their last online health query changed the way they manage pain or cope with a chronic condition, compared with half of e-patients living with chronic disease. It is worth noting that there are people living with chronic pain who are not included in this survey’s definition of the chronic disease population since we ask only about heart conditions, lung conditions, high blood pressure, diabetes, and cancer. Thus, the percent of chronically ill e-patients whose pain or condition is affected in part by information they find online is likely even higher. 

One e-patient living with chronic pain wrote that the social aspect of her online community helps her cope: “I can’t talk to my family or friends and have them truly understand what I am dealing with. [Online] I can get great advice, and be encouraged to go another day when I am having the worst pain day of my life. It is a wonderful place to be when there is no other place to turn to.”

Apropos of asking a doctor new questions, one e-patient wrote, “I like to keep up to date with the latest research on my illnesses.  That way if something new comes up that I want to try I can ask my doctor about it.”

One third of adults living with chronic disease say they or someone they know has been helped by online health advice.

Because we are interested in the internet’s impact on the entire population, we asked the following question of all adults, not just internet users:

  • Have you or has anyone you know been helped by following medical advice found on the internet?

Thirty-six percent of adults living with chronic disease say they or someone they know has been helped by following medical advice or health information found on the internet, compared with 45% of adults reporting no diseases.

Very few adults, regardless of health status, say they or someone they know has been harmed by following medical advice or health information found on the internet (2% of adults living with chronic disease, compared with 3% of adults with no chronic disease).

Have you or has anyone you know been helped by following medical advice found on the internet?

While one would expect chronic e-patients to be more likely to say they have been helped by information they find online, people living with chronic disease are surrounded by thorny issues which may not be as easily solved as the health questions posed by people dealing with more run-of-the-mill concerns. When the stakes are high or the outlook is grave, help may be more measured and breakthroughs few and far between. In addition, someone dealing with a new, life-changing diagnosis has different information needs and expectations than someone who is already living the long, hard slog of a chronic condition.

Indeed, one person wrote, “I keep looking to find something new to help me function better but new information doesn’t come very quickly. The most helpful use of the internet is getting new research articles.”

Another e-patient warned about the dangers of online health information: “It’s important to be able to distinguish between reliable and unreliable sources of information on the Internet. Because of my background, I am usually able to do that… I know quite a few people who, in my opinion, have been harmed by bad health information. However, they tend to be people who rely unquestioningly on opinions of friends and/or so-called alternative health practitioners and do NOT take the time to conduct their own research.”

In some cases, basic advice is what makes the difference. One woman wrote, “I was having very little progress in controlling my and my husband’s sugar count as we are diabetics.  After looking at various websites we are doing much better at staying active, eating reduced portions and controlling the amount of carbohydrates. We have found the best times to take our various medicines [and] we get good reminders on how we can make changes to improve our health.”