Health Stories: Triggers for Seeking Health Information Online
When you design a health Web site, the most important questions to ask are how and why someone will come to your site. To help my Online Consumer Health students answer these questions for the sites they design, they create personas and then develop scenarios that start with the persona’s trigger for going online and continue with the persona’s ongoing education and support needs.
Triggers can be related to the calendar, the news, an existing health problem, a concern about a potential health issue, or a new diagnosis or prescription. Triggers can occur because of the time of year: searches for “diet” spike on the first week of each new year and crash a week later. Bill Tancer reported on the frequency of health searches related to a diagnosis of a famous person in the news. The most common trigger is the need to learn more about one’s own or a loved one’s health issue. Susannah Fox said, “A medical crisis flips a switch in people.” With 52% of online health inquiries on behalf of someone else, a loved one’s medical crisis is often the trigger that leads to health searches.
Jill D. is a researcher from New Hampshire whose mother was diagnosed with a gastrointestinal tract tumor. Shocked and worried when she heard this, Jill wanted to immediately learn more. She needed to understand what the diagnosis meant for herself and to help her mother understand it; she also needed to help her mother evaluate treatment options. Jill doesn’t live near her mother so couldn’t go with her mother on her next doctor’s appointment. She would have felt comfortable asking her own doctor questions, but didn’t have an appointment otherwise scheduled. So she went online.
In June 2006, my (then) 74-year-old Mom was told that she had a gastrointestinal tract tumor that was probably cancerous. As soon as I heard, I wanted to find out what treatment options would likely be offered to my Mom as well as the statistical likelihood of survival.
I looked online for information because I’m not in my doctor’s office often enough to be able to ask my own physician, “Say, what do you know about tumors of the GI tract?” Also, I wanted to browse through written information at my own pace rather than trying to listen closely to a quick data dump.
I looked online over the course of several evenings. I know that the trustworthiness of information on any given website is highly dependent on the source of the information, so I concentrated on sites provided by highly reputable medical establishments such as the Mayo Clinic and the US National Institutes of Health.
By far the most useful information for my purposes was available at the National Cancer Institute. The reason I found it so helpful is because I was able to read the same article in two versions, one intended for patients and the other for medical providers. I am not a medical provider but I am used to reading dense, scientific journal articles. Thus I carefully went through a page entitled, “Gastrointestinal Carcinoid Tumors Treatment“.
I learned that these tumors tend to grow very slowly and, if the tumor is localized, the 5-year survival rate is 70 – 90%. My Mom was wondering if she would be subjected to radiation treatment but this article indicated that radiation is rarely helpful for these types of tumors so I told her that her oncologist would probably not prescribe radiation. Further, I found out that tumors smaller than 1 cm rarely spread to other areas (metastasize) but that tumors greater than 2 cm frequently metastasize; this told me that my Mom’s 1.6 cm tumor could go either way.
None of the information in the preceding paragraph was available on the page intended for patients, so I was grateful for the chance to read the pages intended for health professionals. I had to look up a few words, such as “telangeictasia” (the formal term for spider veins, one of the potential signs of GI carcinoid tumors). Despite my incomplete medical vocabulary, I felt reasonably confident that I understood the article and wouldn’t misrepresent the information when relaying it to my Mom.
This story has a happy ending because my Mom underwent surgery to successfully remove the tumor and—even better—the tumor was not at all cancerous. Six weeks after the operation my Mom was feeling healthier than she’d felt in years and went off on a long car trip.