Fighting Diabetes

A new portal, the Diabetes Information Resource Center, is designed to unite organizations fighting the disease.

by / March 2, 2005
From 1980 through 2002, the number of Americans diagnosed with diabetes more than doubled -- from 5.8 million to 13.3 million -- according to the Centers for Disease Control and Prevention (CDC). Another 5 million people may be undiagnosed with the chronic disease, according to national statistics.

Every state in the nation has a Diabetes Prevention and Control Program (DPCP), but the California Diabetes Program (CDP), under the Department of Health (DHS), is using technology to respond to the epidemic.

The state is launching its Diabetes Information Resource Center (DIRC), a Web-based system to collect and communicate best practices, share resources and data, and promote collaboration on diabetes-related issues throughout California. The site may be the first of its kind in the nation, its creators said.

The online information clearing-house is operated by the CDP, which is charged with reducing the burden of diabetes in California.

"That's kind of a tall order. We look out for those who are at risk and for those who have it, so that's an even taller order," said Susan Lopez Mele, CDP administrative manager, and media and marketing specialist for the organization. "We try to really look at the big picture and figure out how we can be more helpful."

The Web-based DIRC fills gaps in health care and encourages collaboration among organizations fighting diabetes throughout the state, Mele said.

"Providing a 'one-stop' shopping experience, organizations will easily find and use what is available, thereby reducing duplications of effort," she said. "This means more people with diabetes would have a better chance to prevent costly complications such as blindness, amputations, kidney failure, heart disease and strokes. By improving health and health-care delivery, we ultimately will reduce health-care costs."

DIRC's launch comes when more than 2 million Californians are diagnosed with diabetes, and at least that many more risk developing the disease during their lifetimes.

Organizations submit profiles of their work to DIRC, and other groups can search the online data to find programs that complement their work or fill a current need. That model may be unique among state government health programs, Mele said.

However, similar technology could soon link multiple state programs, providing even broader information sharing among these organizations, she added.

The Diabetes Division at the CDC has an online reporting system that state diabetes government programs, like California's, use for reporting surveillance, epidemiology and program evaluation activities, Mele said, adding that the CDC can search the system for information submitted by all states and territories. "A new feature will be added soon where state programs can search all other diabetes programs. We are told this will be ready in 2005."

In 2002, the CDP created California's Plan for Diabetes: 2003-2007, which emphasized four specific areas for special attention: increased access to care, improved quality of care, promoting primary prevention and guiding public policy.

"For the last several years, we've been working really hard to step back and assess what we're doing, and also assess what's going on in California to make sure we're doing the right thing -- that we make good decisions, that we're filling gaps that need to be filled," Mele said.

In 2003, the CDP conducted a statewide diabetes assessment, and after getting input from industry partners, boiled down responses and created goals to make the CDP most useful.

"One of the major gaps was communication," Mele said. "We recognize there's a lot of really good work being done in the state -- tiny projects having an impact in a small community to huge health plans doing great work -- but what's clear is those folks don't regularly communicate with each other, and sometimes they reinvent the wheel because they don't know the other guy already did it."

DIRC was born of that realization. The idea started years ago, but grew after the assessment, and gained support from industry partners and within the DHS.

Some partners participating in the development of DIRC include Aventis, the California HealthCare Foundation, the California Optometric Association, the California Public Health Workforce Training and Technology Coalition, the Diabetes Coalition of California, and Lifescan, a company that produces blood glucose monitors.

The Flip Side
Though DIRC targets everyone connected with diabetes -- health professionals, community-based organizations, coalitions, advocacy groups, local/county/state health departments, health plans/medical organizations, support groups, educational institutions, media, funding agencies, policy-makers, and people who have or are at risk for diabetes -- Mele said its primary audience is organizations rather than individuals with diabetes.

"Anybody can visit DIRC, but the ADA [American Diabetes Association] has a great site for the individual," she said, adding that DIRC directs individuals to the ADA site. "DIRC is designed to help organizations in their diabetes work."

The guiding theme is meeting a need, said Karen Black, DIRC project manager and evaluation lead for the CDP, because what's missing right now is a Web site for organizations that work with those who have, or are at risk for, diabetes.

"With DIRC, [those organizations] won't have to waste their time sifting through numerous Web sites for information," Black said. "We want folks to quickly find what they're looking for, so they can continue doing the important work of helping people with diabetes."

The initial stages of DIRC are being funded by the CDP with a grant from the CDC. David Levin, president of the Web design company Angry Sam Productions, is building DIRC from scratch.

Levin coordinates the entire project with the CDP staff, and provides technical assistance to help them turn their ideas and goals into a functional Web site.

"The Web site is meant to be an online learning community where organizations large and small, urban and rural, throughout California can find each other and share ideas and resources," Levin said.

Because nothing else like it exists, Levin said DIRC's creation has been time consuming.

"We've been doing our best to create an extensive and all inclusive diabetes resource center where organizations can find models, resources and data about diabetes," he said. "At the same time, we want DIRC to be extremely easy to use and administer."

Benefits and Rewards
The first phase of DIRC was completed in February and set to launch March 1, said Mele, who expects full implementation by the end of 2005.

At that point, Levin said, the resource center will have two key resources.

One function is designed for all types of organizations to search and find diabetes community intervention models, educational resources and data categorized by intended recipients of the data, whether it be for caregivers, patients or community groups.

The second function is a back-end administration system that will allow the CDP staff to keep the site running smoothly, and will prompt partner organizations to upload and maintain content related to their particular project.

Besides enabling groups to share what they've done, Black said DIRC has turned into much more.

"There's information about how local groups can apply for grants. [DIRC] accepts different data and statistics at both the statewide and county level. It includes national level tools and resources; educational opportunities for those who work with people who have diabetes; a bulletin board where people can have a moderated discussion about diabetes; as well as a feature about laws and regulations that will show what kind of legislation is pending, what has been passed related to diabetes and what kind of regulations have come out of that," she said, adding that the CDP is working to make DIRC a portal that leads to already available information in addition to providing original content.

"A lot of it already exists, and we need to pull it together," she said. "Some of it doesn't exist, and we'll need to create it. It's going to be pretty all encompassing."
Jessica Jones Managing Editor