E-patients With a Disability or Chronic Disease
Part 2. Searching for Answers Online
E-patients with chronic conditions are likely to be searching for answers to their own health questions.
As in past surveys, we asked respondents to think about the last time they went online for health or medical information, hoping to capture a portrait of a typical health search.13
Fifty-three percent of e-patients with chronic conditions say their last search was related to their own health or medical situation. Twenty-nine percent of e-patients with chronic conditions say their last search was on behalf of someone else. Thirteen percent of e-patients with chronic conditions volunteered that their last search was both for themselves and for someone else.
By contrast, e-patients with no chronic conditions are likely to be acting in a caregiver role, gathering information on behalf of someone else. Fifty-one percent of e-patients with no chronic conditions say the last time they went online for health or medical information, their quest was related to someone else’s situation; 7% say their last search was for both themselves and for someone else. Thirty-three percent of health seekers say their last search was in relation to their own health or medical situation.
General search engines still dominate, but e-patients with chronic conditions are more likely than others to turn to trusted health sites.
During their last online health inquiry, 56% of e-patients living with disability or chronic disease began with a search on a general search engine like Google or Yahoo. Thirty-seven percent of e-patients with chronic conditions skipped the search and went right to a specific website they know provides health information.
Opportunity: If health care providers have sites or key words to recommend, e-patients with chronic conditions may be especially receptive.
By contrast, 67% of e-patients with no chronic conditions say their last query began at a general search engine. Twenty-six percent of e-patients with no chronic conditions say their last health information session began by going to a specific health website.
Most e-patients visit two or more sites during a typical online health inquiry.
One in five e-patients, regardless of health status, visited just one site the last time they got health information online. The majority visited two or more sites. The following responses from e-patients with chronic conditions are not statistically different from answers provided by e-patients who report no disability or chronic disease:
- 21% of e-patients with chronic conditions say they visited one site during their last health information session.
- 37% say they visited two or three sites.
- 22% say they visited four to five sites.
- 12% say they visited six to ten sites.
- 1% say they visited 11 to 20 sites.
- 3% say they visited more than 20 sites.
- 4% say they do not recall the number of sites.
Half of e-patients with chronic conditions later talked to a doctor about what they found online.
The Health Information National Trends Survey (HINTS), sponsored by the National Cancer Institute, found a significant disparity between what people say is their preferred source of information about cancer and where they actually go to gather it. In a national survey conducted in 2003, 49% of adults said they would go first to a health care provider if they had a strong need to get information about cancer. In the same survey, however, people who said they had recently looked for cancer information for themselves were likely to say they looked online – 46%, vs. 11% who had consulted a health care professional.14
The Pew Internet Project’s 2006 survey finds that e-patients living with disability or chronic disease are more likely than other e-patients to take advantage of both online and offline information sources. Fully 49% of e-patients with chronic conditions talked with a health professional about what they found online during their most recent search, compared with 30% of e-patients with no chronic conditions, possibly because those living with chronic conditions are highly likely to have seen a doctor in the past year.
In addition to a telephone survey, which provided all numerical data covered in this report, the Pew Internet Project asked members of the Association of Cancer Online Resources (ACOR) to write essays about their use of internet health resources.15 Many ACOR respondents describe their doctors as supportive “partners” or “teammates” in their care. As one e-patient wrote, “Fortunately, we had a doctor with a sense of humor and who was not an Ultimate Authority on Everything. He was open to the things we learned online. If he hadn’t been, maybe we’d have changed doctors.” Another e-patient wrote, “With the information I have gathered on the internet…I have used my doctors more as expert consultants…They seem to appreciate that I am an informed and educated patient and are very willing to work with me on that basis. The only downside to this approach is that perhaps they assume that I know more than I do, but then I just go back and do more research.”
However, there is a significant group of e-patients with chronic conditions who do not discuss their online research with a medical professional. It may be that the e-patients do not wish to share their findings or it may be that doctors discourage such conversations. As one person wrote, “I have not found a doctor who wants their patients to use the web.” The 2005 HINTS survey suggests that this perception of disinterested doctors may need to be updated. About half of internet users in that survey said they have ever talked to a doctor, nurse, or other health care provider about online health information, and of those, only 8% encountered a health professional who was “not at all interested.” Fully 73% of e-patients who discussed their online research encountered health professionals who were “very” or “somewhat” interested in their findings.
Opportunity: Health care providers may want to make “Do you ever go online for health information?” a standard question.
E-patients with chronic conditions are likely to use their online health research to aid care decisions, ask new questions of their doctors, and manage chronic conditions.
Just 9% of e-patients with chronic conditions say their last health information query had a major impact on their own health care or the way they care for someone else. Forty-three percent of e-patients with chronic conditions say their last search had a minor impact. Another 43% of e-patients with chronic conditions report that their last search had no impact at all on their own or someone else’s care. These responses are not significantly different from those provided by e-patients who report no disability or chronic disease.
However, e-patients living with chronic disease or disability who reported any impact, major or minor, were significantly more likely than other e-patients to describe the following four effects:
- 75% of e-patients with chronic conditions say the information they found in their last search affected a decision about how to treat an illness or condition, compared with 55% of e-patients with no chronic conditions.
- 69% say the information led them to ask a doctor new questions or to get a second opinion from another doctor, compared with 52% of e-patients with no chronic conditions.
- 57% say the information changed the way they cope with a chronic condition or manage pain, compared with 36% of e-patients with no chronic conditions.
- 56% say the information changed the way they think about diet, exercise, or stress management, compared with 42% of e-patients with no chronic conditions.
- Both groups of e-patients reported the following effects to essentially the same degree:
- 61% say the information changed their overall approach to maintaining their health or the health of someone they help take care of, compared with 54% of e-patients with no chronic conditions.
- 36% say the information affected a decision about whether to see a doctor, compared with 35% of e-patients with no chronic conditions.
Opportunity: Online research may be part of a “coached care” program to help people get the most out of their health care.
One e-patient wrote, “Doctors are always in a hurry. By researching online I can find information that fills in gaps in my knowledge, and allows me to ask better questions of the doctor. I also find out information that the doctor hasn’t shared with me, but it is important for me to understand my disease.”
E-patients with chronic conditions are likely to report strong feelings, both positive and negative, about their online health inquiries.
We gave respondents eight different ways – four positive and four negative – to describe how they felt during their last search for health information online. It is striking that for all e-patients, positive assertions about the impact of their online health searches significantly overshadowed negative responses. The following responses were in line with answers from the general population of internet users who go online for health information:
- 71% of e-patients with chronic conditions say they felt reassured that they could make appropriate health care decisions. As one e-patient wrote, “Finding [a specific support group]…was terribly reassuring – it gave me peace of mind that what my urologist was doing was the correct course of action, and gave me access to a wealth of information.”
- 59% say they felt relieved or comforted by the information they found online. Another ACOR member wrote, “After diagnosis, I immediately searched online and immediately found this wonderful list. No one can understand a disease better than someone who has it and has researched it for years.”
- 56% say they felt confident to raise new questions or concerns about a health issue with their doctor. One e-patient put it this way, “[Online health resources] helped me take an active role…and follow up rather than being a passive ‘whatever the doctor says’ patient.”
- 55% say they felt eager to share their new health or medical knowledge with others. When asked to describe the most significant benefits or upsides of an online health community, an e-patient wrote, “Knowing that you are doing what you can to help others who have come down the path after you, and who are as bewildered as you were when you were on the path.”
- 30% say they felt overwhelmed by the amount of information they found online. As one person wrote, “At times I must stop reading and take a break as the information can be overwhelming. Of course having a chronic non-curable disease is overwhelming also. Sometimes repressing reality is therapeutic.”
- 19% say they felt confused by the information they found online. Another e-patient wrote, “Each website is a little different…beyond my vocabulary in many cases. But the information is useful.”
- 9% say they felt frightened by the serious or graphic nature of the information they found online. As one person wrote, “As someone who is newly diagnosed…it is emotional and a little disturbing to find all these people with such a terrible time with this disease. I don’t have the experience yet to know whether my situation will be the same, better or worse.”
One question elicited different responses from the two groups:
- 31% e-patients with chronic conditions say they felt frustrated by a lack of information or an inability to find what they were looking for online, compared with 20% of e-patients who report no chronic conditions.
The frustration highlighted in this survey echoes what we found in previous studies of e-patients living with disability and chronic disease. In a survey conducted in 2001, most respondents found most or all of the health information they looked for online, while 14% said they ran out of time or had to stop looking before finding all the information they sought and 6% of e-patients reported that they could not find the information they sought. Those living with chronic disease or disability were the most likely group to say they gave up before finding the right information, possibly because they are looking for more detailed or rarer kinds of material. As one e-patient wrote, “I have been disappointed when I have had a question and NO ONE responded. I think that this happens with more rare or esoteric issues related to [my disease].”
Most e-patients with chronic conditions do not consistently check the source and date of the health information they find online.
Few e-patients are vigilant about checking key information quality indicators of the information they find online, regardless of health status.
Just 14% of e-patients living with disability or chronic disease say they “always” check the source and date of the health information they find online, while another 18% say they do so “most of the time.” Sixty-seven percent of e-patients with chronic conditions say they check the source and date “only sometimes,” “hardly ever,” or “never.” These figures are not markedly different from the responses provided by other e-patients, although those living with chronic conditions are less likely than those with no chronic conditions to say they “never” check the source and date (13%, compared with 22%).
The Pew Internet Project’s 2006 survey findings stand in contrast to our 2001 survey: e-patients with serious concerns were likely to be vigilant in their attention to the source and date of the information they found.16
E-patients may be giving up on a search for a needle in a haystack. The U.S. Department of Health and Human Service’s Office of Disease Prevention and Health Promotion, working with industry experts, identified six types of information that should be publicly disclosed to health seekers: the identity of the site’s sponsors, the site’s purpose, the source of the information provided, privacy policies to protect users’ personal information, how users can provide feedback, and how the content is updated. Of the 102 websites reviewed for the 2006 report, none met all six of the disclosure criteria and only six complied with more than three criteria. Just 4% of “frequently visited” health websites disclosed the source of the information on their pages and 2% disclosed how the content is updated. Less-popular health sites fared even worse: 0.3% of these sites listed their content’s source and only 0.1% disclosed how the content is updated.17 As the online health market expands, this issue will most likely grow along with the number of websites available to consumers.
Opportunity: The Medical Library Association (http://www.mlanet.org/) provides tips and resources for consumers who want to be sure they are accessing the best information available.
It is important to note that e-patients may have turned to other quality controls in the face of a fruitless search for source and date information. For example, one e-patient wrote, “Having access to medical journal articles and others’ opinions of articles were the reason that my brother lived much longer than expected and had an improved quality of life. Being able to email world specialists and/or call them for help made a huge difference in his medical care with his local doctors.” Another wrote, “The web-based stuff can point you toward information, but to get solid, in-depth knowledge you need to access a medical library, in my opinion. The problem: Medical libraries are few and far between for most people.”
E-patients with chronic conditions are particularly tuned in to the benefits of following medical advice or health information found on the internet.
Just 4% of e-patients with chronic conditions say they or someone they know has been seriously harmed by following the advice or information they found online, which is about the same percentage of e-patients with no chronic conditions who agree. Forty percent of e-patients with chronic conditions say they or someone they know has been significantly helped by following medical advice or health information found on the internet. By comparison, 29% of e-patients with no chronic conditions say they or someone they know has been significantly helped by online health information.
ACOR members were asked to share a particular incident or story from their own experiences that makes an important point about online health resources. Here are a few of the stories:
- “After diagnosis it seems everyone has the same experience of shock, dismay, etc. Having the ability to speak with others who have experienced the same thing is invaluable. My greatest fear was dying at 46, not seeing my kids get married, and not seeing and holding my grandkids. I guess I automatically assumed the worst, but I think most of us do. Talking to others who have received the same treatment and are surviving fine 10 to 12 years later really gave me hope. Suddenly the diagnosis didn’t mean I was going to die young, and I found out that my particular type of leukemia is not only highly treatable, but also has a fantastic cure rate. I went from being anxious and depressed to being hopeful, and that change has made all the difference.”
- “After my hysterectomy, I went for post-op. The gyn who performed the surgery had a pathology report and read the diagnosis (low malignant potential) without explanation, and glossed over it. I went home and immediately searched the term on the internet. Imagine my surprise when the first site in the list was the cancer center at UPenn! Nothing like diagnosing YOURSELF. The doc never mentioned the C word. Through further study, I found [an online cancer group], who sounded the battle cry: ‘Get thee to a gyn-onc.’18 That was nearly 8 years ago.”
- “I wasn’t sure whether or not something I was experiencing was a side effect of treatment, or possibly a symptom of a different illness. I asked my doctor and he didn’t think it was a side effect of the treatment, so I looked through the archives of an online community and found someone else had asked the members about the same issue. I learned that many others had the same side effect and their doctors told them how to avoid or care for it. I showed my doctor printouts from the online forum and he was appreciative of receiving the information and said he’d share it with his associates in case anyone else had been asked about it.”
- “I have seen pictures of other people suffering from my same disease. A picture is worth a thousand words. I have never seen another person who has my disease face to face.”
- “I have too many stories to recount. My wife was paralyzed from a plasmacytoma wrapped around her spine. This happened gradually, while we were under the care of a hematologist, oncologist, and other doctors. We went from specialist to specialist and it wasn’t until she was unable to stand that one finally did the full MRI of the spine that should have been done to start with. They had done MRIs but all too low. Recently on the list a new person described his wife’s symptoms. They were identical to what my wife’s had been. I advised him to demand a FULL MRI of the spine and they found a plasmacytoma on her spine. They caught it in time to avoid the paralysis my wife has suffered. I feel good about that.”
These stories echo what other researchers and observers have found: The internet can help people engage with health care in new, unexpected, and important ways. A person with diabetes might learn to control their diet through the help of an online guide.19 A doctor might use a site like Isabel Health Care to diagnosis a rare form of leukemia or an unexpected complication.20 “Offline” family and friends can join “online” friends in an integrated support group for people with hearing loss.21 Epilepsy patients can band together to create an information resource that guards against misinformation.22
- “Online Health Search 2006” (Pew Internet & American Life Project, Oct. 29, 2006). Available at: https://www.pewinternet.org/PPF/r/190/report_display.asp; “Vital Decisions: How internet users decide what information to trust when they or their loved ones are sick” (Pew Internet & American Life Project, May 22, 2002). Available at: https://www.pewinternet.org/PPF/r/59/report_display.asp ↩
- See http://hints.cancer.gov/ ↩
- Barbara K. Rimer, Ph.D., dean of the University of North Carolina’s School of Public Health, has led in-depth studies of ACOR members. For example, “How Cancer Survivors Provide Support on Cancer-Related Internet Mailing Lists” (Journal of Medical Internet Research: Vol 9, No 2, 2007). Available at: http://www.jmir.org/2007/2/e12 ↩
- “Vital Decisions” (Pew Internet & American Life Project: May 22, 2002). Available at: https://www.pewinternet.org/Reports/2002/Vital-Decisions-A-Pew-Internet-Health-Report.aspx ↩
- “Report on Objective 11-4: Estimating the Proportion of Health Related Websites Disclosing Information That Can Be Used to Assess Their Quality” (Department of Health and Human Services, May 30, 2006). Available at: http://www.health.gov/communication/healthypeople/obj1104/default.htm ↩
- “Gyn-onc” refers to a gynecologic oncologist. ↩
- See “CalorieKing And Joslin Diabetes Center Team Up to Promote Diabetes Prevention and Management Through Healthy Food Choices” (Joslin Diabetes Center: July 31, 2007). Available at: http://www.joslin.org/1083_4103.asp ↩
- “Why Doctors So Often Get It Wrong,” by David Leonhardt (New York Times: Feb. 22, 2006). “For doctors, diagnosing gets a technological boost,” by Erin Donaghue (USA Today: Sept. 6, 2007). See also: http://www.isabelhealthcare.com ↩
- “Beyond Hearing: Where Real-World and Online Support Meet,” by Jonathan N. Cummings, Lee Sproull, and Sara B. Kiesler. (Group Dynamics: Theory, Research, and Practice, 2002, Vol. 6, No. 1, 78-88). ↩
- “Learning from e-patients at Massachusetts General Hospital,” by John Lester, Stephanie Prady, Yolanda Finegan, and Dan Hoch. (British Medical Journal: May 15, 2004). Available at: http://www.bmj.com/cgi/content/full/328/7449/1188 ↩