Government, Cancer Survivor Form Information Partnership
Nov. 3, 2000 (Washington) -- After careers in real estate, banking, and even movie production, Joe Kanter has begun a new mission at age 76. Now he wants to equip patients with the kind of information they need to make medical choices that improve their quality of life, even if that means shortening its length.
"I am very, very passionate. I plan to spend most of my money ... to facilitate this," Kanter says. He has undertaken the novel venture of creating a foundation in his own name to help the federal government devise methods of getting people in touch with what scientists refer to as "outcomes."
This means going beyond whether a particular treatment helps a patient recover from disease and tackling lifestyle questions, such as driving a car, living on one's own, or even resuming a normal sex life. Such information may or may not be available in today's complex medical environment, but it can make the difference for a patient struggling to make a treatment decision.
So Kanter is in the early stages of creating the Health Legacy Partnership, or HELP. He is working with the U.S. Agency for Healthcare Research and Quality to build an ambitious health outcomes database that would be accurate, accessible, and updated daily or as needed. Once assembled, the data would probably be available over the Internet, as well as in print.
While the project is still on the drawing board, Kanter says it might be something like a medical version of Consumer Reports magazine. Toward that end, Kanter already has contributed about $1.5 million to the agency to get the project launched. However, the effort will require probably $1 billion dollars in start-up money. In the meantime, Kanter is soliciting other organizations to join in the effort to collect data.
The agency's director, John Eisenberg, MD, MBA, would like to put more resources into the project that could help patients make decisions like whether surgery or drugs is the best approach to epilepsy, or why there are some huge regional variations with outcomes for certain conditions like breast cancer. Putting together a database on a single disease might cost $10 million, he says.
"If we could get a system together to get them that kind of information ... I'm confident enough [to say] that it would make a big difference to people's outcomes and their satisfaction," Eisenberg says. For example, he points out that one study shows that 20% of patients with cancer of the larynx opted for a treatment that would spare their voice, even though it likely would not prolong their lives as much as some other treatments.
Kanter has a powerful personal motive to build a new information system. Last year, he was diagnosed with prostate cancer and struggled to decide whether he should have surgery, radiation treatment, or just do nothing to stop the disease. He ultimately opted for radiation, based more on recommendations than hard facts that he calls the "critical missing piece."
The entrepreneur cemented his deal with the agency during the last six months, and the private-public partnership appears to be off to a good start. If successful, it could begin to answer some of the most basic questions in medicine, such as who can give me the kind of care that I want?
"I am so struck that the most powerful people in American health care have to call friends and ask, 'Where's the best place to go? And who's the best person, and what are the outcomes likely to be?' And if they can't find it, nobody else can," Eisenberg says.