`Is there anything out there that can help?’
If you or a friend or family member has a serious illness, this question springs readily to mind, especially if a doctor can’t offer an immediate or promising cure.
Now that we’re living in the information age, patients and their loved ones are tapping into the Internet and other sources in the hopes of coming across a report of a promising new treatment. For those who don’t have the time, energy or expertise, there are also services that will take information over the phone about diagnosis and other relevant aspects of the illness, perform the search and then mail you exhaustive reports.
Consumers aren’t attempting to get a diagnosis from these services–their doctor has already done that–but what the services provide is information about clinical trials that have or are being conducted to test treatments for the disease, articles outlining the latest research on the condition, information about survivors, physicians who specialize in treating the condition and, in some instances, alternative or non-traditional medical treatments.
One reason that patients are increasingly turning to research, says Michael Donio, with the People’s Medical Society, a non-profit advocacy group in Allentown, Pa., is that information can be the key to opening gates in the world of managed care. Unless they can document that a certain treatment or referral to a specialist is relevant and necessary, their insurer may not authorize the procedure or a visit to a specialist.
And busy doctors can’t be expected to be acquainted with all the research and latest medical advances on a particular condition, notes Donio. A well-informed patient can better engage his doctor in conversations about healing possibilities.
Indeed, when her husband was first diagnosed as having a brain tumor in 1990, Oak Park resident Julia Schopick was stunned. After he underwent chemo and radiation therapy, she contacted a research service for a report on the condition. From that point forward, she felt comfortable by having a “sense of knowing what’s out there.”
When he later had seizures, she purchased another report that yielded research that convinced her husband’s doctor that a change of medication was warranted.
To be sure, a layman has no business making a medical diagnosis or prescribing treatment. In the Chicago area, where there are several well-respected medical centers, most specialists are probably pretty well-versed in treatment options, notes Dr. Kim Meyers, an Evanston internist.
Still, says Dr. Meyers, “I don’t think many good doctors would be threatened (by patients discussing research they’ve done).” In fact, he notes that a patient or a patient’s family member will often say, “That’s what I read,” in response to his discussion of treatments. “It is reaffirming that we’re both coming to the same conclusions,” Dr. Meyers says.
Here is a look at some of the services that will provide medical information for a fee, and some advice for sleuthing on your own:
– The Health Resource, Inc. (800-949-0090; Web site: www.thehealthresource.com). This Conway, Ark., firm charges $375 to research a cancer condition and $275 to prepare a report on non-cancer problems. Shipping charges are extra. For these sums, a researcher will pull off relevant articles from various medical databases, including a version of MEDLINE, which taps directly into the National Library of Medicine, and provides more than consumers can find searching MEDLINE themselves via the Internet, explains Sissy McNew, research assistant.
Reports typically take about five working days to prepare, unless the need is urgent. The Health Resource offers a money-back guarantee that the customer will be satisfied with the report, which typically runs 100 to 150 pages for non-cancer illnesses and 250 pages for cancer reports, says McNew.
– Health Search, Inc. (847-577-1043, www.cl.ais.net/hlthsrch). This Mt. Prospect company charges $90 for a reference search, which usually runs about 10 to 20 pages, and provides a listing of articles and summaries of many of them. For $225 a more comprehensive report can be prepared, which typically runs 100 or more pages and includes some full text articles as well as relevant self-help groups and support organizations. Shipping charges for either report are extra; those charges are $15 for overnight delivery and $4 for two-day delivery.
Reports generally take a few days to prepare, says Mary Lynn Bower, who runs Health Search. “I often call the client back during the process to hone in on exactly what they want.” She offers a 14-day money-back guarantee.
– The Institute for Health and Healing Information Service (415-923-3681). This San Francisco organization has three different charges for reports. An “in-depth health information packet” costs $100 and typcially runs about 100 pages, says Roz Kutler, librarian at the institute. The “basic packet” costs $40 and contains fewer articles, especially fewer in-depth medical journal pieces, such as those found through databases like MEDLINE. For $35, a customer receives a “computer-searched bibliography” that lists medical articles on the topic and also includes some article summaries. Information about alternative medicine can be included in any of the reports, especially the first two. Cancer conditions are only researched in an in-depth or basic packet format.
The computer-searched bibliography takes about five working days to deliver, while basic and in-depth packages take about 10 working days, depending on the volume of requests, says Kutler.
– Medsearch Inc. (888-INFO-400, www.medsearchinc.com/). This New Jersey company charges $99 to search databases and send a report in about four days; the cost is $149 for overnight delivery. “We try to be really thorough with the patient on the phone before we do the search so we can know exactly what he’s looking for,” says Gina Mannino, a Medsearch researcher. Reports range from 15 to 100 pages. Customers are offered a refund if “we don’t find anything new,” relates Mannino.
– Schine Online (800-FIND-CURE, www.findcure.com). This Providence, R.I., company is run by Gary Schine, himself a leukemia survivor, and tends to specialize in cancer conditions, but also will prepare a report on other diseases. The cost is $195 for cancer reports and $120 for other problems. Cancer reports run about 150 pages, other reports about 70 to 90 pages. Information about non-traditional or alternative medicine treatments can be included. “We provide the most recent research,” says Schine. If a customer is not satisfied, Schine says he will try to resolve the complaint or offer a refund.
