Database to offer one-stop shopping for treatment options

Two groups are working to create a national database to help patients and physicians determine the best approaches to various diseases.

By Damon Adams, amednews staff. April 9, 2001.

Three years ago, Joseph Kanter went searching for a cure after being diagnosed with prostate cancer.

However, he found more confusion than answers.

The Miami developer said some physicians told him to watch and wait; others waffled between radiation and surgery. Urologists and medical centers such as Johns Hopkins could not agree on the best treatment.

"I got different things from different people," said Kanter, who eventually decided on radiation and is winning his battle with cancer.

Kanter now wants to help patients and physicians make the best treatment decisions based on scientific research. To that end, his Washington, D.C.-based Kanter Family Foundation is partnering with the Agency for Healthcare Research and Quality in hopes of establishing the National Health Outcomes Database project.

The database would improve health care decision-making by allowing patients and physicians to tap into evidence-based information and health outcomes research, organizers said. The data would enable them to decide which treatments work best for specific diseases and outcomes.

"I noticed that the physicians did not have easily accessible, statistically reliable health outcomes data. If they don't have it, they can't give it to me," Kanter said.

Physicians likely would use the Internet to access the database during patient office visits.

"Patients and clinicians can sit down together and find out the answer to a question," said Carolyn Clancy, MD, director of AHRQ's Center for Outcomes and Effectiveness Research.

The database would join other efforts that use technology to help improve health care.

Many physician groups and health organizations offer practice guidelines through their Web sites. There are sites with information on diseases and treatments, including MEDLINEplus Web site (http://www.nlm.nih.gov/medlineplus/). In addition, a step-by-step patient guide produced by AHRQ with support from the foundation is also available on their Web site.

The Kanter foundation and AHRQ held discussions in October 1999 and April 2000 with medical experts on creating the national database. In February 2001 the foundation established a Web site about the project (http://www.healthlegacy.org/).

The database would report treatment outcomes of patients according to age, health, lifestyle, severity of condition and tolerance of side effects. Personal identifying information would be removed to ensure privacy.

Some obstacles remain

But organizers admit they must overcome several obstacles before the database becomes a reality.

Privacy of a patient's medical information is one concern. Consumers would have to be assured that their data would be safe.

Kanter has pledged about $2 million to develop a prototype, but he estimates the total cost for the database to be $20 million to $50 million. He said government agencies, nonprofit and consumer groups and businesses are needed to provide funding.

The foundation and AHRQ want physicians to give input on what the database should feature, and they will be talking to physician and patient groups in the next few months. They said they are still deciding who would decide which data to use and how to present the information.

Kanter said he is not sure when the database would be ready for the public, but it likely will start with material on one disease and grow to include other conditions. Bringing the information together in one place would make it easier to determine the best treatments, organizers said.

"There are a ton of different treatments. There's not really a centralized source out there," said Craig Turk, Kanter Family Foundation executive director. "This [database] will really empower patients and physicians."