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Archive for Thursday, October 23, 2003

Politicians get behind national database of medical treatments

Proposed network would give patients access to research others’ experiences

October 23, 2003


— Prodded by a 79-year-old Miami philanthropist, political and medical leaders are pushing for a national electronic network of data to let patients and doctors make better choices on treatment.

The idea is simple: A man who has prostate cancer or a woman with a chronic condition such as arthritis could plug into a database and learn about others who fit their profile and what treatments worked or did not work.

"The information is out there -- we need to collect it and share it so it is useful," said Joe Kanter, a retired developer and cancer survivor who has led a six-year crusade to establish a national database.

"This would lower costs, improve care and save lives," he told a conference Wednesday on ways to help patients make better decisions.

His Kanter Foundation and the federal Agency for Healthcare Research and Quality, which have formed a partnership, brought together clinicians, industry leaders and government officials who agreed on the need for information-sharing.

And Kanter's lobbying brought in some heavyweights. Former Senate leaders Bob Dole and George Mitchell spoke out for the project, and current Senate leader Bill Frist praised it in a videotaped message.

"This is so simple, so logical and so powerful in its implementation that it boggles the mind our society has not done this before now," Mitchell said.

A recent RAND study found that patients -- and doctors -- were hungering for reliable information comparing treatment "outcomes," but patients were forced to "make difficult decisions every day with little or poor information to inform those choices."

The obstacles to an accessible national network are substantial. The RAND study estimated that each database for a disease or condition could cost $5 million to $10 million a year to standardize records and keep them updated.

Dole, in an interview, said, "catching medical error is one more good reason to have this database."

Kanter was diagnosed with prostate cancer almost 20 years ago, and was dismayed that he could get only "anecdotal information" about the different treatment options. Dole had a similar experience.

"The reason support is growing for a database is that we are all patients," Kanter said. "Sooner or later, even senators and presidents will be patients."

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