When Patients Go Online
by miriam karmel, contributing writer
When it comes to the world of online medical forums, the doctor is always in, and the questions
keep on coming. These forums are important to patients
and increasingly popular with them. Ophthalmologists who participate
in online medical forums report that they’ve been able to provide advice and feedback on a wide range of conditions,
from the routine to the rare. In some cases, they’ve even been able to dispense life-saving information.
Such “ask the doctor” Web sites represent
a new twist in the way patients seek out medical information. Here is a look at who’s asking questions, who’s answering them and what Internet forums
might mean for your practice.
Who’s Worried Now?
To get a sense of the scope of questions submitted, consider the following:
What’s that spot? John C. Hagan III, MD, FACS, is in private practice in Kansas City, Mo., and also helps dispense eye care information through the Eye Care Forum (www.medhelp.org
), a partnership between MedHelp International and the Academy. He recalled the time a parent came online and told him that every time he took a picture of his infant’s face, the pupil on one side was white. The father wanted to know what that meant. Dr. Hagan explained that the symptom could represent
a congenital cataract, a potential tumor or a severely malformed eye. He also told the father, “This is an emergency.
Call the pediatrician and find a pediatric ophthalmologist.” Later, the father came back online to report that the child had retinoblastoma.
What’s hyperopia? “My 5-year-old recently had his first eye test; we were told to come back for the eyedrops and another test. This is his prescription.”1
Thus began an exchange between a woman identifying herself as “WorriedMom”
and Ray T. Oyakawa, MD, MBA, who is in private practice in Torrance,
Calif., and fields eye care questions
online at MedHelp.
When WorriedMom asked, “Can you explain what this prescription means, can he grow out of it? Also is it possible to make mistakes when testing children?” Dr. Oyakawa replied, “You need to get the glasses. These are very hyperopic eyes.” The woman wrote again, “Can you explain hyperopic?” Dr. Oyakawa explained the term and urged WorriedMom to consult a pediatric
Expedient Method of Communication
The conversation at online medical forums reveals that eye care providers aren’t always communicating as well as patients would like. Many of the people who turn to online doctors are there because their concerns weren’t answered by their personal doctors, said Dr. Oyakawa. Michael J. Kutryb, MD, another MedHelp ophthalmologist,
agreed that online forums help address patients’ unmet needs. “So many patients on the forums seem to have little or no meaningful relationships
with their eye care provider. It is unclear what the cause of the poor communication is, but the problem exists
nonetheless,” said Dr. Kutryb, who is in private practice in Titusville, Fla.
Even though busy doctors have created
new ways to improve communication—
such as using allied personnel, physician extenders, videos and other media—these efforts aren’t enough in some cases, said William C. Lloyd III, MD, who, until recently, fielded questions
on WebMD.com. “Many patients leave the clinic not sure what they’re supposed to do,” said Dr. Lloyd, an ophthalmologist and ophthalmic
pathologist based in Sacramento, Calif.
The Doctor Is In
While many questions posted online are relatively routine, ophthalmologists report fielding queries leading to diagnosis
of serious conditions such as retinoblastoma (shown here), multiple sclerosis and hypertensive crises.
tools and techniques
2 may 2009
The result: They turn to an online forum. At MedHelp, for example, there are more than 6.5 million visits per month. Of those, some 250,000 visits are to the eye care areas.2
MedHelp was created to give people facing life-threatening conditions the best medical information and support. “Since then, it’s expanded to giving people a place to get the best medical support, period,” said Cindy Thompson,
who cofounded MedHelp in 1994.
At MedHelp, people often seek the support of others who share a similar condition. Or they may correspond online with one of the 125 doctors—four of whom are ophthalmologists—who are available daily to answer questions.
“We think about people living in rural areas, or people with HMO restrictions who may never have the ability to see the ‘best’ doctor at the ‘best’ eye institution,” Ms. Thompson said. “Our doctors are tremendous at explaining what the disease is, what patients need to watch for and the questions they need to ask their doctors.”
Dr. Hagan, who was instrumental in fostering the partnership between the Academy and MedHelp, spends up to an hour every other day when he’s “on call.” (The four MedHelp ophthalmologists
rotate.) He equates this time commitment to the charitable work some peers provide at free clinics.
About the Patients
While some online patients are unhappy,
most are simply confused or are digging deeper. “Often people aren’t sure when they’re at the doctor the right question to ask, so they turn to the Internet for more information,” said Sandy T. Feldman, MD, MS, a MedHelp expert and refractive surgeon
in private practice in San Diego.
Dr. Oyakawa agreed, saying that, for example, five days after surgery, someone may ask: “Is this normal?” or “I don’t see my surgeon until next week and I forgot to ask this question.”
“Basically, people are looking for more information about their conditions,”
said Dr. Feldman, who has been with MedHelp for a year. “And many times, people are confused by what they’re told,” she said. For instance, Dr. Oyakawa said he has heard a number of concerns
from people who have received
conflicting medical opinions. “I think the most frequent overall topic has to do with lens implants—which one to choose,” he said.
Walking a Fine Line
Online doctors never make a diagnosis.
At least that’s the rule at MedHelp. “MedHelp is there for information,” Ms. Thompson said. “All of our doctors
answer in general terms only.”
“We use phrases such as, ‘sounds like,’ ‘usually it’s’ or ‘most likely it’s,’” said Dr. Hagan. In addition, he never criticizes another doctor, in part because
there’s a chance he doesn’t have all the pertinent information. Dr. Lloyd agreed, “Never, never, never beat up the other provider, no matter how wrong you think he or she is.” It’s unprofessional,
he said. “Also, you don’t know all the facts.”
There’s no question that dispensing information online means that these virtual physicians sometimes have to walk a fine line:
• You’re the doctor. On one hand, as Dr. Lloyd noted, “The consumer is in the mindset that they’re talking to a doctor, and often they’ll weigh the value of your statement.”
Moreover, for some people, the online doctor is the only source of medical help, said Dr. Feldman, who recalled a person with an obvious eye problem who consulted the MedHelp eye forum because he had no medical insurance.
• You’re not the doctor. On the other hand, these online ophthalmologists aren’t interested in replacing the real thing. “I’m a kiosk. I’m a sign in a bus station,” quipped Dr. Lloyd. “Hopefully,
the information I share will amplify that [physician-patient] relationship.” But it will never replace it, he said, noting
that he dispenses advice with the caveat: “Don’t change anything without
checking first with your doctor.”
The others also use this tactic. Dr. Feldman noted that she often urges online participants to report to a doctor.
“In almost every e-mail the person really does need to seek the care of a doctor.” Dr. Hagan added that he refers people to the Academy’s homepage for help in finding an ophthalmologist.
As for Dr. Kutryb, he regards his online presence as a way to provide good information to people in need and, at the same time, serve as an ambassador for the ophthalmology profession. He tries to be compassionate
and understanding while doing his best “to lead patients in the right direction,
which is usually to an ophthalmologist’s
Dr. Lloyd’s online experience has taught him that “there are enormous gaps in the exchange of important information between patients and doctors.”
He stressed that he’s not criticizing
doctors, but rather the system that doesn’t leave time for sitting and listening. “Online communities have served as a surrogate,” he said.
Dr. Lloyd envisions a time when doctors will incorporate some of the lessons learned in their experience with Internet forums into everyday practice. In one scenario, the doctor will seat a patient at a computer at the end of the office visit. The computer will be programmed to address the patient’s unique situation. If, for example,
the patient has just been told he has pseudophakic bullous keratopathy, the computer will explain everything the patient needs to know about that condition. At the same time, a printer will generate information tailored to the patient’s needs, including the medical
regimen he is to follow and any requirements for follow-up care.
“A lot of people are working on this paradigm right now,” said Dr. Lloyd. “They’re bringing the physician-patient
relationship to the 21st century.” In the meantime, he urged ophthalmologists
to consider offering their expertise via an online community.
1 This posting edited for clarity.