Big players like the Cerner Corporation, which maintains electronic health systems for 8,000 clients, including large hospitals and retail clinics, and smaller players like Practice Fusion, which offers its Web-based health record systems free to health care providers, say they make use of patient data collected from their clients.
A spokeswoman for Cerner, whose Web site promotes its “data mining of our vast warehouse of electronic health records,” said the company shares de-identified patient data with researchers or drug companies looking for patients to participate in clinical trials. The patient records are “double scrubbed,” she said, explaining that the company removes personal data like names and addresses before it runs a search using a numbered code for each patient.
Other sensitive information, like mental health records, might be removed before the patient data is sent out, she said.
The Web site of Practice Fusion, meanwhile, quotes Ryan Howard, the chief executive, as saying that the company subsidizes its free record-keeping systems by selling de-identified data to insurance groups, clinical researchers and pharmaceutical companies. In an interview, however, Mr. Howard said Practice Fusion had not yet started selling patient information but that it intended to do so.
NEW regulations require notifying patients if their personally identifiable medical information gets loose, and they prohibit selling protected health records. But privacy advocates said electronic health records remain vulnerable because no federal law now forbids the sale of de-identified health care data
From: "Slipstream - How Private Can Electronic Data Ever Be? - NYTimes.com."
Inexcusable. My health data is *MY* asset.
If Cerner, Practice Fusion, and Patients Like Me can make money selling my anonymized healthcare data, why can't I:
1. Sell it on my own? Who will create the Ebay for me to profit from #myhealthdata? (note: It is very early for this kind of thing to float, but give someone 5-7 years - we don't want another Carol.com for #myhealthdata).
2. Donate it to charities/nonprofits and govt. agencies doing public health research, etc. ?