(From the Editor of Mid-Hudson Options Project - "I have included this article and a reply to the article from the Health Sciences Institute. The reply points out that patients are consumers and have the right to demand complete information on their illness from their doctors").
Docs Not Insulted When Patients Scour Health News
By Melissa Schorr
NEW YORK, Dec 12 (Reuters Health)
Cancer patients' increasing reliance on sources such as the Internet and the news media for their medical information does not seem to damage their relationship with their doctors, Canadian physicians report.
"Patients are now more and more proactive--they trust their doctors, but still want to learn more," senior author Dr. Lillian
L. Siu, an assistant professor of medicine at the University of Toronto and an oncologist at the Princess Margaret Hospital in Toronto, told Reuters Health. "Physicians in a busy practice can't give them as much information as they would like to obtain."
Siu, along with her colleague Dr. Xueyu Chen, conducted a survey of 410 Canadian oncologists and 191 cancer patients
to measure whether using outside news sources impacts the doctor-patient relationship. Their findings are published in
the December 1st issue of the Journal of Clinical Oncology.
The researchers found that nearly 54% of the cancer patients said the medical information provided by their doctors was
not sufficient and 71% said they searched for additional information on their disease elsewhere. Of those who searched
for more information, 50% used the Internet. However, doctors were the primary source of information for 83% of patients,
compared with just 7% for the Internet.
The physicians were more ambiguous about their patients' reliance on outside sources of medical information. Sixty
percent thought the medical information provided by the media was accurate only "sometimes" and nearly a quarter
thought the information was "rarely" accurate.
In addition, 90% of the oncologists thought it was difficult for their patients to correctly apply the information they read to
their own personal medical condition. Still, 38% of the oncologists were supportive and 45% had neutral feelings about
patients seeking outside information, with only 16% reporting feeling "mildly irritated." Overall, the survey found that 63%
of the patients and 86% of the doctors did not feel seeking outside information negatively impacted their professional
"I was gratified to find the relationship between patients and doctor was not jeopardized," Siu said. "Both physicians and
patients don't feel this information gathering is impeding their relationship, which is very important."
Siu added: "Cancer is obviously a serious problem that patients want to take initiative and learn more about their own
illnesses. Physicians are aware of this phenomenon, we don't feel threatened by it. We feel it helps some patients to cope better.
"However, the time we have to answer the extra questions isn't always feasible. We know there's a need, and sometimes
we don't fill that need as much as we would like. We need the cooperation of the media to make sure the information
presented to patients is balanced and accurate."
SOURCE: Journal of Clinical Oncology 2001;19:4291-4297.
REPLY TO ARTICLE From Health Sciences Institute
HAVE YOU INSULTED YOUR DOCTOR LATELY?
December 14th, 2001
Cancer patients everywhere can breathe a sigh of relief now that we have proof that doctors aren't insulted when patients look elsewhere for information about their disease.
That's the message from an article I read yesterday on Reuters Health. "Docs Not Insulted When Patients Scour Health News" read the headline. And the story goes on to praise oncologists for patiently tolerating their patients' questions and quests for more information.
Of all the examples of medical egomania and media apathy this may be the worst.
"It's all about ME!"
When you look at the actual research that spawned this article, you see that PATIENTS are the real story. The big news should be that oncologists are failing the majority of their patients by not providing enough of the information they want and deserve.
The study I'm talking about was designed to assess the impact of the media and the Internet on the treatment of cancer. To gather their data, researchers distributed questionnaires in the lobbies of Canadian cancer clinics for a two-week period. They also mailed questionnaires to all doctors registered with Canadian oncology associations. The cancer patients were asked questions about their sources of health information, how they were coping with their illness, and basic demographic information. The doctors were asked their opinions of medical information in the media and on the Internet, and the impact this information has on their patients and practices. A total of 191 cancer patients and 410 oncologists completed the questionnaires and were included in the analysis.
Here's what they found: most cancer patients (86.4 percent) said they wanted "as much information as possible about their illness." Yet the majority of those patients (53.7 percent) said the information they received from their physicians and other health care providers was "insufficient."
Don't let the door hit you on the way out of the doctor's office...
When you look at the rest of the data, that's not surprising. The majority of oncologists (54.2 percent) reported spending less than 15 minutes with their patients during office visits. Another big chunk (36.2 percent) reported spending between 15 minutes and 30 minutes. That leaves fewer than 40 doctors out of more than 400 who reported spending more than 30 minutes with patients on a regular basis. And remember, these are cancer patients, not people with sore throats.
According to Dr. Lillian Siu, an oncologist and one of the lead researchers in the study, "Physicians in a busy practice can't give them [cancer patients] as much information as they would like to obtain...the time we have to answer the extra questions isn't always feasible." I understand the point...but if doctors can't give cancer patients their full time and attention, exactly whom are they saving it for?
As the headline was quick to point out, most doctors reported feeling "neutral" (45.3 percent) or "supportive" (38.4 percent) about their patients who search for additional medical information. (Another 16 percent reported feeling "mildly irritated.") Yet I noticed that patients weren't asked how they felt about their doctors' inability to provide them with enough information. Considering that many of the patients surveyed have spent more than 30 hours searching for information their doctors couldn't give them, you'd think some of them might feel "mildly irritated," too.
Here's the bottom line: patients have the right and the responsibility to take charge of their health. If doctors don't like it, too bad. We shouldn't be asking doctors how patients can make things easier for them - doctors should be focusing on ways to serve patients' needs. We need to change the way we think about health care, and put patients where they belong - in the center.
If your doctor doesn't give you enough time and attention, demand more. If you feel that your doctor is irritated by your knowledge of health issues, find a new doctor. I know it's not always that easy, but it's the only way we'll change the status quo. At the very least, have an open discussion with your doctor about your concerns, and make it clear that you expect an open dialogue about health information you bring to the table - not a condescending pat on the head.
As for us, we'll keep bringing you the latest breakthrough health information to help you make your own choices and continue learning about all the options. Even if your doctor might get "mildly irritated" that you know about new research before he does.
To Your Good Health,
Health Sciences Institute
Thanks to Mid-Hudson Options Project.
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