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Sound Bites That Bite Back Passin’ the Buck

Across the Rubicon

Posted by Judy Feder of Brodeur on January 13, 2009
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Tom Daschle’s confirmation hearings this week have put the spotlight on health care in the president-elect’s parade of problems. The transition Web site (www.change.gov) continues to commit to a $10 billion annual investment in electronic health records (EHRs) and other health info technologies. In The New York Times, Steve Lohr’s recent piece on EHRs paints a tantalizing picture of mining information to discover patterns that could save lives and improve the quality of care. An additional piece of this digital puzzle comes in the form of the thousands of conversations patients are having with one another online. In fact, in another recent article, The Times itself reported on a breast cancer survivor learning about reconstruction options through an online patient community. No one knows how many such communities exist, but they are thriving – and vital. The Association of Cancer Online Resources (www.acor.org), a grassroots home to multiple communities, posts some 1.5 million messages every week. The cancer e-patients I know and love rely on patient communities to find about side effects, dosing options, off-label protocols and much more that has helped guide their treatment and sustained their quality of life. I knew I had crossed my own Rubicon when my doctor asked me the other day about an experimental blood test I’d had, “what’s the word on the street from your online friends about this?” Along with the potential for evidence-based discoveries through electronic health records, the wisdom of patients makes available a vital source of experiential data. We must avail ourselves of both.

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