Online Medical Information for Patients: Where Quality Beats Quantity

I have been pretty lucky as a freelance writer. There have been very few times that I haven’t been paid for my work. In one of those cases, I was approached by a medical magazine in Canada — it’s always nice when they call you — about doing a guest column for medical professionals about online medical information. The editor and I discussed all of the details: pay, deadlines, bylines, residual rights, and so forth. One thing I forgot to bring up was a kill fee.

You guessed it. When I finished the column and submitted it, nothing happened. After a few months, I was informed that the magazine had been sold and the new editor wasn’t interested in my column. Since it was a relatively small amount of money, the magazine was in another country, and I had no kill fee in the contract, I never collected a dime from the column. It’s been sitting on my hard drive for the last nine years or so (I save everything), so I decided to post it on my blog.

I hope you enjoy the article. If you want another story about my lymphoma experience, take a look at “Rodeos, beer, and cancer.”

I found an odd lump on my chest. Neither my family doctor nor the dermatologist he called in had ever seen anything like it. They took a biopsy, and called a few days later to tell me I had an appointment with an oncologist. It was a frightening time, but I assumed it would be a melanoma, and they would simply cut it out and send me on my way. I was wrong.

The oncologist informed me that I had a dermal large b-cell lymphoma—it had manifested in my skin rather than my lymph system. He took a bone marrow biopsy, and recommended immediate monoclonal antibody and chemotherapy treatments. I left his office reeling from the news. I walked out with a little informational pamphlet about lymphoma, a fistful of prescriptions, about a half-liter of barium sulfate for the next morning’s C-T scan, and a bloodstream full of Demerol.

Trivia for the day: The background in the picture above is what large b-cell lymphoma looks like. The image in the foreground is the Rod of Asclepius, which is historically the symbol for medicine. The caduceus, with wings and two snakes, has often been used mistakenly in the U.S. as a medical symbol for over 100 years.

I’m not afraid of anything I understand, but I knew nothing about lymphoma, Rituximab, or CHOP. I hadn’t checked into a hospital since I was seven years old. I was downright terrified. My immediate mission: find out everything there is to know about this cancer in my system and its treatment methods.

I knew I’d lose the hair on my head, but what about body hair? Would I be able to keep food down? Would I lose a third of my body weight, as a friend did when he went through chemo in the 70s? Were there new, more-effective anti-nausea drugs or would I have to use medicinal marijuana, as he did? With my ravaged immune system, how could I protect myself against infection when I worked on my ranch?

The pamphlet was only mildly useful. It was just too generalized. So I turned to my usual resource for first-line research: the Internet. I found a whole lot of highly technical information that was probably wonderful for an oncologist, but useless to me. I couldn’t understand it. I also found thousands of Web pages written by patients and their friends and families. Nice, but of questionable accuracy. There just wasn’t much to be found that met my criteria: it had to be authoritative, understandable, and comprehensive.

Had I been suffering from a common disease with a well-understood and long-unchanged course of treatment, things might have been different. Dermal lymphomas, however, are rare, and monoclonal antibodies are still becoming established as mainstream treatments. There is a lot of conflicting information online, and it’s very difficult for a layman to determine which information is truly authoritative.

Medical patients simply can’t get all of their information from friends, phone-in radio shows, and newspaper columns. We can’t rely on what some unknown author keyed in to their personal Web site—even if there is an “MD” after their name. Our lives are on the line here.

Medical journals are written for medical professionals, and that is as it should be. The information is carefully vetted and peer-reviewed. There is a crying need for trained medical professionals to produce a body of peer-reviewed medical information written for laymen, with a meaningful stamp of approval on the individual articles.

It would not be necessary for all of this information to reside on a central Web server, nor for a single administrator to oversee it. All that would be required is a central directory or search engine for information carrying the aforementioned stamp of approval.

I ended up getting the information I wanted. I used up a lot of my chemo nurse’s time (she’s not only an RN, she’s a cancer survivor), and asked my oncologist many questions. I read articles online and in magazines. I got data from cancer support networks. Eventually—that’s the key word—I learned about my disease and its treatment. But that was no substitute for what this scared and lonely patient needed the afternoon of my diagnosis: fast, clear, information I knew I could count on.

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