E-patients With a Disability or Chronic Disease
Part 3. Recently Challenged or Diagnosed E-patients
Americans with fresh experiences of serious diagnoses and medical crises are likely to use the internet for health information.
One-quarter of adults (27%) say they or someone close to them has been diagnosed in the last 12 months with a chronic medical condition, such as asthma, diabetes, heart disease, or high blood pressure. One-third (34%) of American adults say they or someone close to them faced a serious medical emergency or crisis in the past 12 months.
These two groups, the recently diagnosed and the recently challenged, constitute a special case. Seventy-one percent of these adults go online and, of those, 84% look online for health information.
“Recent challenged or diagnosed e-patients” — Internet users who say they or someone close to them has received a serious diagnosis or gone through a health crisis in the last 12 months and who search online for information on health and health care
Older adults, those with less education, and minorities are more likely than other groups to report a recent diagnosis; By contrast, everyone seems equally at risk for a health crisis.
Americans age 50 and older are more likely than younger Americans to report a recent diagnosis (31% of those age 50 and older, compared with 21% of those age 30-49 years old). Americans with less education are more likely than those who have graduated from college to have received a serious diagnosis in the past year (35% of those with less than a high school education and 29% of those who have a high school diploma, compared with 21% of college graduates). African Americans and English-speaking Hispanics are more likely than whites to report a recent diagnosis (33%, 42%, and 24%, respectively).
Americans with a recent diagnosis are somewhat less likely to be internet users. Sixty-five percent of recently-diagnosed Americans go online, compared with 71% of those who have not received a serious diagnosis, either their own or someone close to them. Those who are online are likely to be active e-patients. As one e-patient wrote, “My first action when I got home from the hospital with my diagnosis was to get on the internet to find answers to the millions of questions bombarding me.” Others are fortunate to have family and friends available to search on their behalf, as another e-patient wrote: “The night I told my best friend of my diagnosis, her husband went online to find a support list for me.”
By contrast, everyone seems equally at risk for a health crisis.
The population of adults who report that they or someone close to them faced a serious medical emergency or crisis within the last 12 months looks like the general U.S. population. No one age group stands out, nor does any ethnic group. Adults with college degrees are as likely to report a health crisis as those with less education. However, 80% of recently challenged Americans go online, higher than the average of 70%.
Recently challenged or diagnosed e-patients are more likely than other groups to say their last search had a major impact on their own health care routine or the way they care for someone else.
The impact of the most recent search for health information was most deeply felt by internet users who had received a serious diagnosis or experienced a health crisis in the past year, either their own or that of someone close to them. Fourteen percent of these e-patients say their last search had a major impact, compared with 7% of e-patients who had not received a diagnosis or dealt with a health crisis in the past year.
Recently challenged or diagnosed e-patients report the following effects:
- 59% say the information found in their most recent online search led them to ask a doctor new questions or to get a second opinion from another doctor, compared with 48% of e-patients who had not experienced a health challenge in the past year.
- 46% say the information changed the way they cope with a chronic condition or manage pain, compared with 31% of other e-patients.
Opportunity: Doctors, nurses, website developers, public health advocates and anyone else involved in health information dissemination should be especially tuned in to hard-hit e-patients’ interest in gathering data and advice online.
E-patients facing serious challenges are likely to report strong feelings about their last health inquiry.
When recently challenged or diagnosed e-patients describe their last online health inquiry, they seem to have higher highs and lower lows than other e-patients:
- 74% say they felt reassured that they could make appropriate health care decisions, which is the same percentage as e-patients with no recent crises in their own lives or in the life of someone close to them.
- 61% say they felt confident to raise new questions or concerns about a health issue with their doctor, which is significantly higher than the 51% of e-patients with no recent crises to report.18
- 58% say they felt relieved or comforted by the information they found online, compared with 54% of other e-patients.
- 57% say they felt eager to share their new health or medical knowledge with others, compared with 45% of other e-patients.
- 30% say they felt overwhelmed by the amount of information they found online, compared with 22% of other e-patients.
- 25% say they felt frustrated by a lack of information or an inability to find what they were looking for online, compared with 19% of other e-patients.
- 22% say they felt confused by the information they found online, compared with 14% of other e-patients.
- 13% say they felt frightened by the serious or graphic nature of the information they found online, compared with 7% of other e-patients.
ACOR members wrote about some of the emotions they feel as they search online for answers. For example:
- “As a parent of a child who, at 3 years old, was diagnosed with Acute Lymphoblastic Leukemia, it’s very overwhelming at the beginning. The child is hospitalized, all kinds of new terms and medical jargon is being thrown at you and you are emotionally overwhelmed and the same time trying to digest information that you never knew existed but has become extremely important to you. Having other parents available to help share their experiences is like having a lifeline.”
- “As the mother of a 4-year-old who was diagnosed with cancer, I was not able to look online or read about the disease until after treatment. I couldn’t handle the emotional turmoil of gaining knowledge which also scared me.”
- “I’ve had to educate myself very quickly – alone. Without the internet medical resources I would be sitting in libraries for time I don’t have, out of my house and without access to the amount and quality of information received [online].”
- “At the time of my diagnosis, my doctor assumed that I had already gone online to pursue treatment options and the standard course of regimens. I hadn’t. I was too overwhelmed and didn’t know where to turn.”
- “Anne has just been diagnosed. We are numb.”
A study published last year in the Journal of Health Communication interviewed newly diagnosed cancer patients about their first eight weeks of treatment and found that one-fifth of patients who had not previously used the internet to gather health information became more active e-patients.19
In addition, newly diagnosed cancer patients who used the internet during those first two months were more likely than non-user patients to ask their doctor questions during their last office visit and to say they have a “partnership” with their doctor. The authors note that the most popular reason for upgrading one’s connection to online health resources was the serious and life-threatening diagnosis of cancer, plus access to either a computer or someone close to them with a computer.
Unfortunately, people facing a serious diagnosis are the most likely group to be offline in an online world, to not only lack internet access, but also to lack friends and family who can go online for them. Americans age 70 and older and people living with chronic disease or disability are likely to benefit from the in-depth, just-in-time information available online, but are among the least likely groups to have access to it.
- The margin of error for comparison of recently challenged or diagnosed e-patients (n=758) and those who report no recent health challenges (n=836) is +/- 5%. ↩
- “Relationship of Internet Health Information Use With Patient Behavior and Self-Efficacy: Experiences of Newly Diagnosed Cancer Patients Who Contact the National Cancer Institute’s Cancer Information Service,” by Sarah Bauerle Bass, Sheryl Burt Ruzek, Thomas F. Gordon, Linda Fleisher, Nancy McKeown-Conn, and Dirk Moore. (Journal of Health Communication, 11:219-236, 2006). ↩