A SHOT IN THE ARM : Web Sites, CD-ROMs Give a Booster to Patients Seeking Medical Advice
Carol Holt of Pittsburgh had been experiencing tingling and numbness in her right hand for about a year and a half. When the symptoms of a twitching and unmistakable tremor appeared, her family physician and a neurologist could find no cause. So she and her husband, Ken, went to their computer for answers.
Frustrated by the lack of a diagnosis, Ken Holt, a software developer, pored over the Mayo Clinic Family Health CD-ROM. “It was there that I read that early stages of Parkinson’s disease are often misidentified as an essential tremor,” Ken Holt said. The couple then consulted a second neurologist who, at first, disagreed that Carol Holt, 43, had Parkinson’s.
“In the few weeks prior to the follow-up appointment, I got onto the Net and found everything I could about PD,” Ken Holt said. “By then, I was absolutely convinced that that’s what we were dealing with. I found a number of excellent Web sites and did a lot of reading. The more I read, the more convinced I became.”
Eventually Carol Holt’s neurologist agreed with the Parkinson’s diagnosis, though Ken Holt maintains that the physician “was slightly annoyed that we were so knowledgeable and convinced that it was PD. She cautioned us against believing everything we read about PD on the Internet.”
Today, Carol Holt is an active member of the Parkinson’s mailing list group (listserv@vm.utcc.utoronto.ca).
Stories like this will become common as more patients learn how to perform medical searches online. The biggest boon for patients is likely to be Internet Grateful Med (https://igm.nlm.nih.gov/), a new search engine based on the popular Grateful Med software from the National Library of Medicine.
Like its software parent, Internet Grateful Med (IGM) can search 35 medical databases, including MEDLINE, which offers references and abstracts from more than 3,700 medical journals around the world. In testing of the beta version of IGM, I found it to be more focused than its software parent, which I consider the best medical software.
With IGM you don’t have to know the arcane medical terms normally used to find articles. Say, for example, you wanted to research the possible complications of surgery to treat your 1-year-old’s chronic middle ear infection, otitis media. You could simply list “ear infection,” “complications,” and “surgery” as keywords, and the search engine would automatically look up articles about otitis media.
With IGM you can also define your search by language (English, French, German, Spanish); by groups studied (human, female, male, animal); and even by age groups (newborn, infant, child, adolescent, adult, middle age, over 65, over 80). For my search about surgical treatment of middle-ear infections, I narrowed it to English-language articles about infants ages 1 to 23 months.
IGM scanned the MEDLINE database and found 1,294 articles about “ear infections,” 94,730 about “complications,” and 87,960 about “surgery.” Of the 83 articles that combined all three keywords, 63 were in English and 13 concerned infants. The cost for retrieving those 13 references, including abstracts, was $2.03. The search took less than a minute, and I found three articles that were particularly useful.
To gain access to IGM, apply to MEDLARS ([800] 638-8480) at the National Library of Medicine, or NLM. Registration is free, but you must complete an application listing your method of payment (either by quarterly invoice or credit card). After NLM receives your completed application, it will send you a user ID code and password by mail.
If you don’t have Internet access but want to search NLM’s databases by modem connection, you can order Grateful Med software from the National Technical Information Service ([800] 423-9255).
Once you have the Grateful Med software, you can reach MEDLINE and the other NLM databases through a toll-free number or via the Internet. After you’ve downloaded references and abstracts from MEDLINE, the next step is to retrieve the full-text version of the most promising articles. Grateful Med offers a companion program, Loansome Doc, which connects to biomedical libraries that will mail or fax the complete articles for a fee. Alternatively, you can go to your nearest medical library to retrieve the full text.
The final and most important step in the research process is sharing results with your doctor. But before starting a search, talk with your health-care provider about your concerns. He or she may offer helpful keywords to save you time. Then mail, e-mail or fax copies of the articles you find to your provider. Limit your mailing to no more than two articles, and make sure they get there a week before your follow-up appointment.
Finally, inquire about communicating with your doctor via e-mail. Some physicians freely give out their e-mail addresses: One physician I know even has e-mail office hours once a week, reviewing and answering messages he’s received in the last seven days.
If your doctor participates in a joint medical cyberspace effort, odds are that you’ll both learn valuable information about your condition and treatment.
If you believe your doctor is uninterested in either going online or communicating with you about your online efforts, consider looking for another physician.
* Tom Linden is coauthor of “Dr. Tom Linden’s Guide to Online Medicine” (McGraw-Hill). He can be reached via e-mail at trl@netcom.com.
