- The Washington Times - Sunday, August 24, 2003

Americans with health problems want a reliable, one-stop shop to find the most effective treatment, according to a recent report, which bolsters ongoing efforts by private groups and the government to create such a national database.

“We found a very strong desire among patients to have access to an information source that would not only explain what their condition is, but would also help them understand what the various treatment options are and what outcomes people like themselves could expect,” says the report by RAND, a research and development think tank.

The report, released last month, focuses specifically on prostate cancer and osteoarthritis.

RAND found overwhelmingly that scientific-based comparisons of various treatments and outcomes were difficult for patients to obtain. When it was available, it was not clear and rarely explained individual experiences when factoring in variables such as age and race.

Faced with differing opinions on the best treatment for their conditions, patients relied heavily on other patients, as well as the Internet, to get information, the report found. But most of it was anecdotal and patients were not confident in its accuracy.

Some private groups and lawmakers want to change that.

Joe Kanter, executive director of the Kanter Family Foundation and a survivor of prostate cancer, teamed up with the Department of Health and Human Services four years ago to address this issue.

Mr. Kanter became involved after he had trouble figuring out the best treatment option for his cancer.

“I found there was no statistically reliable numbers that could compare what treatments you did for prostate cancer,” Mr. Kanter said.

Mr. Kanter’s private foundation and the HHS’s Agency for Healthcare Research and Quality, want to create a national health outcomes database containing scientific data on the best treatment for disease, based on documented, long-term patient information.

He said millions of surgeries and treatments are documented every day, but no one has collected the information in one place and consistently tracked outcomes.

Mr. Kanter’s idea has grabbed the attention of several lawmakers, including former Sens. Bob Dole, Kansas Republican, and George Mitchell, Maine Democrat. The two men say creating such a database will create a more standardized approach to treatment.

“In determining the best course of treatment through empirical evidence, we can reduce some of the wide variation in treatment patterns found between different hospitals and physicians,” the two wrote in an Aug. 17 opinion piece in The Washington Times.

Mr. Mitchell said the database would help doctors as well, as they try to figure out the best treatments.

A critical step to creating such a database is moving health data to electronic form. The Centers for Disease Control and Prevention already has created a database for infectious diseases and bioterrorism.

The RAND report says the cost for a national health outcomes database would be anywhere from $5 million to $25 million annually, and organizers should gather opinions from patients and doctors before moving forward.

Doctors generally support the database idea, the report says, though doctors say it would be difficult to ensure an unbiased sample of patients. They also had reservations about people being able to view the data without the presence of a doctor.

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