Tuesday, November 29, 2005
Ever since my heart troubles were diagnosed 18 months ago, doctors had told me I needed to repair my mitral valve prolapse, or heart murmur. They would look at my chart and proclaim, "You need to get that fixed now."
My cardiologist disagreed. He felt the amount of leakage between my left atrium and left ventricle -- which determines how damaged the valve is -- wasn't significant enough to warrant surgery. Since he knew my heart better than the others, I trusted him the most.
Eventually the advice of those advocating the surgery -- along with a Mayo Clinic study published in March that encouraged surgery even for patients who are asymptomatic -- prompted me to seek another expert opinion.
My research led me to the Cleveland Clinic, regarded as one of the top heart hospitals in the country. I also had heard that Cleveland was doing a mitral valve procedure that was less invasive than traditional open heart surgery.
I was prepared to fly to Cleveland to meet with one of the doctors. Then I discovered a way to obtain a second opinion without leaving home.
"My Consult" is a Web-based second opinion service offered by e-Cleveland Clinic, the facility's Internet service. Patients who have received a diagnosis of any of more than 600 life-threatening or life-altering conditions can request an electronic consultation with a Cleveland Clinic doctor. For $565, a physician provides a written second opinion and a treatment recommendation -- all within five to seven working days of receiving a completed request.
"We've been working on this program now for about three years," said C. Martin Harris, executive director of e-Cleveland Clinic. "It really came from the fact that as an organization we have been focused on providing high-quality patient care."
"As we thought about that from a patient's perspective, it became clear to us that we had to think beyond the four walls of our institution and start thinking about delivering services to where patients spend the majority of their time."
A Web-based second opinion allows patients to consult with medical experts regardless of where they are located. This service could be particularly helpful for people living in rural areas or overseas, and it also could benefit patients with complex medical conditions.
Then there are people like me who want the best advice available.
Some doctors and medical organizations object to Web-based opinions. They say the elite medical centers that are offering this service -- such as the Cleveland Clinic and Partners HealthCare, which is affiliated with Harvard Medical School -- are trying to steal patients from local physicians.
But Joseph C. Kvedar, director of Partners HealthCare Telemedicine, disputes that argument. He said that less than 1 percent of the patients who receive online second opinions through Partners HealthCare travel to his group's Boston-area hospitals for treatment. The vast majority use the e-opinion to develop a treatment plan with their own or other local physicians.
Because Partners provides its second opinions directly to the physician rather than the patient, Kvedar claims telemedicine can help raise the quality of health care across the country. He said that in Partners's first year of online consultations in 2001, while only 5 percent of the diagnoses were changed, 90 percent of the treatment recommendations differed from the primary physician's care plan.
"This is a perfect way for us to provide collegial advice to another colleague, and they're definitely going to keep the patient," Kvedar said. "I want to make sure I'm clear: I totally advocate the value of a face-to-face relationship with your doctor."
It's Against the Law
As I was going through the e-Cleveland Clinic's seven-step process to receive a second opinion, I was surprised to learn that the Cleveland Clinic is not allowed to provide remote second opinions to residents of the District or Georgia, Kentucky, Louisiana, Nevada, North Dakota, South Dakota, Oklahoma and Wyoming. (Because Partners primarily communicates with doctors rather than patients, its services are unavailable in a different set of states: Iowa, South Carolina, Louisiana, Tennessee and Oregon.)
I got around this ban by using my parents' address in Illinois.
James R. Granger Jr., executive director of the D.C. Board of Medicine, explained in an e-mail that the District does not permit this practice because a Web-based doctor's identity and credentials can't be validated, and the D.C. board can't hold accountable doctors who aren't licensed in the District. Many conditions require a physical examination before a second opinion can be provided.
And finally, he wrote, "there is the issue of need. Many rural states with few practitioners are active in telemedicine. The District is totally urban with three medical schools, many postgraduate training programs and many physicians."
The board does allow D.C.-licensed physicians to consult remotely via the Internet.
Jonathan Linkous is executive director of the American Telemedicine Association, an organization that promotes access to medical care through technology. Linkous called some states' bans of Web-based second opinions a trade barrier designed to protect local physicians.
"It is an anti-consumer law done to protect the health care provider," Linkous said. "It's wrong."
Two Months Later . . .
It took me nearly two months to assemble copies of my medical records requested by the Cleveland Clinic from Georgetown University Hospital and George Washington University Hospital, along with videocassettes of my echocardiograms. I had to submit my requests in writing and pay a $25 to $30 copying fee to each hospital. Then I had to go in person to the doctors' offices to get copies of the records. I also had to get my cardiologist to sign a form, acknowledging my request for a second opinion.
I also filled out an extensive online questionnaire about my medical history. In it, I was asked what were the three most important questions I had. Mine were: Did I need surgery to repair my mitral valve? Was I a candidate for the less-invasive procedure? Was my arrhythmia -- another of my heart's abnormalities -- caused by my mitral valve?
While Cleveland Clinic puts the onus on the patient to provide medical information, Partners HealthCare has the patient's physician do that work. Partners HealthCare's fees can be slightly higher than Cleveland Clinic, ranging from $450 to $750.
I failed to persuade my insurance company to reimburse me for the Cleveland Clinic's advice. According to Mohit Ghose, vice president of public affairs at America's Health Insurance Plans, insurance companies are evaluating how patient privacy and other issues can be resolved before covering this Internet service.
"While our members routinely cover second opinions, the Web-based approach is in an evaluation phase right now," Ghose said. "As new systems come into play, there is always a time period" before they are accepted by insurers.
CIGNA International is one of the few companies that reimburses patients for Cleveland Clinic's Web-based second opinions, only for members living overseas.
And the Result Is . . .
Once the Cleveland Clinic had everything, it took me about a week to receive my second opinion from the clinic. To view it, I logged on to a secure section of the service's Web site.
The doctor did recommend surgery, noting that my left ventricle was increasing in size and its function was decreasing. He did not believe that my mitral valve problem caused my arrhythmia, and indicated that I could be a candidate for the less-invasive surgery. He wrote that I would have to come to Cleveland to be evaluated for such a procedure.
Even though these weren't the answers I wanted, they were straightforward. If I'd had any questions, I could have called Cleveland. But I'd speak only with a nurse -- the doctor who writes the report is not made available.
Armed with the report, I went to see my cardiologist.
He still wasn't convinced that I needed surgery. He also strongly urged that I not have the less-invasive procedure because it was still being tested.
Now I was really torn. On one side was the remote expert from a leading-edge institution telling me I needed surgery. On the other was the doctor who knew my heart best.
In the end, I went with my cardiologist. We decided to monitor my heart more frequently for changes.
Unfortunately, my latest echocardiogram showed my heart function continues to deteriorate. My cardiologist and I now both agree I need surgery.
Getting an electronic second opinion wasn't easy, though I would have needed to do most of that same annoying, time-eating record-gathering for an in-person consult. And even though my insurer would have paid for a face-to-face expert opinion at Cleveland Clinic, I would have had to pay for my travel costs, so the savings would not have been that significant.
So should I have gone immediately with the Cleveland Clinic recommendation? Probably. But I think the e-consult served its purpose. It spurred me and my cardiologist to more vigorously monitor my heart.
And I'm now much more confident going into this surgery knowing everyone agrees this is what I need.