Here’s an example of where patients knowingly give up privacy in exchange for more information that can help them in their struggles…
Ronnie Bachman reports:
The day that Dave deBronkart learned he had Stage 4 kidney cancer, his doctor handed him a prescription slip. On it, he’d scribbled ACOR.org. Within 11 minutes of submitting his first post to the Association of Cancer Online Resources, deBronkart, a software marketer in Nashua, N.H., received recommendations for top specialists — with links included — from patients on the site’s kidney-cancer list. Within half an hour, an e-mail arrived from an ACOR member suggesting which scans might be appropriate and offering details about interleukin-2, the only treatment at the time that resembled a cure. “This is scary, terrifying,” wrote another respondent, “but this list offers a lot of hope.”
Thousands of patients like deBronkart are learning as much online — and from one another — as they are from their doctors. These laypeople are banding together and starting websites to help figure out which practitioners to see and which hospitals to avoid, which clinical trials show promise and which experimental treatments are bunk. But as people take more control of their health care — joining an empowerment movement many are calling Patient 2.0 — plenty of doctors are worried about the quality of the information that is being assessed as well as patients’ ability to understand it. Or as Duke neurology professor Dr. Richard Bedlack puts it, “Just because you have the tools to work on your sports car doesn’t mean you’re ready to do it.”
Read the full article in Time.