Learning About Medical Studies Just Got Easier
The web site has been in development for 18 months. A two-week testing period in November involved 60 volunteers from patient support groups who "pounded on the system for two weeks," says McRay. "They worked hard, they did a lot of searches, and we got very good comments which led to modifications and improvements in the system. Plus we've done other testing."
The system will be updated nightly, and study sites across the country will continually feed data into the site. Confidentiality is guaranteed, says McRay. "People don't have to register, which is very important. We will not track anything about them or give out names."
Calling the project very important, Adrian Dobs, MD, director of the Johns Hopkins Clinical Trials Unit, tells WebMD, "Patients are extremely interested in learning more about clinical trials and they have nowhere to go. There's very little centralization of information about these trials."
Only an estimated 5% of clinical trials have all the participants they need, says Dobs. "Yet there are patients who want to participate. This is a real opportunity for patients to find out what studies can help them. I'm hoping the NIH will be successful. It's a very ambitious job."
Theresa Gillespie, PhD, director of clinical research at Winship Cancer Institute at Emory University in Atlanta, tried the browsing mode first when she investigated the new web site -- and found it full of technical terms unfamiliar to most of her patients. "I looked up 'C' for cancer, which patients would do, and there are no listings for cancer. They've done it by the pathology; there are terms like carcinoma and neoplasms. For a patient, having your pathology report in front of you would really help."
For a less technical search, McRay says, Gillespie could have started on the home page. "Type in 'liver cancer,' for example, and you get 166 listings right there," she tells WebMD.
Medicine is a technical field, and her staff is working hard to make the language on the web site more comprehensible to a lay audience, McRay says. "So when [Gillespie] was saying you need your pathology report in front of you, in a sense she's right. Because when you look at some of the eligibility criteria when you're being considered for a trial, you need certain characteristics, a certain blood count. You do need your pathology report." Another suggestion: "People can take this information to their physicians."
Gillespie suggests that patients print the information right off the computer and take it to their doctors. Also, she says, if patients are searching for information on cancer, they should make sure they know the disease's origin. "I have patients calling me, and many times they'll tell me, 'My mom has liver cancer.' My first question is, 'Does she really have liver cancer or did it start somewhere else and spread to the liver?' The pathology report will tell whether it's carcinoma or adenocarcinoma, and will also give the organ of origin."