DoD introduces an Online Medical Research Library
June 18, 2002 - WASHINGTON (DeploymentLINK) -- Veterans and service members can now find the Gulf War research-related medical information they want on one central web site, thanks to a team within the Defense Department's Deployment Health Support Directorate in collaboration with the Centers for Disease Control and Prevention.
Drue H. Barrett, Ph.D., of the CDC's National Center for Environmental Health, has been a prime mover on this project. She says the idea for the on line medical library, dubbed Medsearch, came as a recommendation from a CDC conference in 1999.
"We brought together a variety of different scientists, researchers, veterans and patients' advocates," Barrett said. "In several different work groups at this conference there was raised this issue that sometimes the research was difficult to search through because it was on several different sites."
So the conference group called for a central location where both veterans and researchers could be brought up to date on the latest research on illnesses among Gulf War veterans. Veterans were interested in having one place where all this medical information and research was available to them, in a way they could understand and access it. Researchers wanted an easier way to keep track of all the research being done in various places. The new Medsearch web site strives to fill both needs.
In July 2001, the DoD, the Department of Veterans Affairs and the CDC agreed to combine their resources to create such a source of information. The formal collaboration has been between the CDC and the DHSD, which was chosen to create the web site because of its track record in putting together web sites to disseminate information regarding related issues, GulfLINK and DeploymentLINK. However the official memo of agreement stresses the importance of cooperation and input from the VA and the Department of Health and Human Services.
"We tried to have the web site be inclusive of all the research that has been funded by the federal government," Barrett says.
It would be very difficult to capture all the research that's been done related to Gulf War veterans' health, but government funded research would at least represent the majority. Most of the research that has been done in this area has come about because of DoD, VA or HHS funding.
Some of the material on Medsearch consists of plain language documents, like the case narratives written by DHSD in the last few years when the organization was known as the Office of the Special Assistant for Gulf War Illnesses. But many of the articles were published in scientific journals and filled with technical jargon the average person doesn't typically use. DHSD officials can't rewrite these documents, of course, but they are committed to making the information in them accessible to all readers. They've done this by adding introductions to the documents that give people a quick summary or synopsis of what they'll find in the documents. And for those who do understand the scientific language, the original documents are posted in their entirety with details of their sources.
"Our first goal was to make sure that there was information out there for veterans," Barrett says, "but we also wanted the site to be useful to researchers, so I think that it will benefit both groups."
The site also features plain language topics so that a layperson can readily identify what he's looking for. For example, expect data on neurological disorders to be listed under "Brain and nervous system." And there are topics listed that you might not see in other medical sources. For example, under environmental and occupational hazards you'll find pesticides and depleted uranium, things that the average HMO may not have much information on, but that Gulf War veterans are keenly interested in.
A variety of agencies have helped with content on Medsearch by contributing documents. The VA and its Research Working Group have tracked just about all the work done related to Gulf War illnesses. Other contributions and assistance have come from the, the CDC, the Deployment Health Clinical Center at Walter Reed Army Medical Center, and the Medical Research and Material Command. All of the actual research articles have been peer reviewed.
To make sure the web site is user friendly and fills the need it was created
to fill, the development team has met with groups of people who make up the
intended audience for the web site. Four such gatherings, called focus groups,
explored the web site in its formative stages and offered valuable feedback
on how it could be improved.
"We thought it was important to get this tested in a variety of different focus groups - veterans, veterans families and active duty people, to get their input on whether it was really meeting their expectations," Barrett said.
Now that the Medsearch virtual medical library has had its grand opening, those who visit the site should know that they are viewing stage one of an ongoing project. This web site will always be a work in progress because it's an information center and information changes all the time. Barrett says she hopes Medsearch will become more and more valuable to veterans as time passes.
"I think it will be really useful to people to have sort of a one-stop shop where they can review all the research that's been funded by the federal government relating to illnesses among Gulf War veterans."