That's Right: Your Hospital's EHR Provider May Make $ Selling YOUR Health Data

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. ?

Posted via web from Jen's Posterous


Brenda F. Bell said...

Look at EHR managers/providers as a publisher of data, and the publisher's library. The provider takes in your data, formats it, stores it, and makes it available. Like most scientific publishers, most of its income is not publication costs billed to the author, but sales of the printed (or electronically-hosted) book.

In the current configuration, publishers gain additional income -- and users, additional value -- through reorganizing and repurposing the data. This could be republishing a photograph or graph, or recompiling papers into different collections of interest to specific audiences. This income is increasingly presumed by the publisher (indeed, the contracts of publication often require the authors to cede to the publisher all rights of recombination and republication to other formats as a condition of initial publication).

Why there's no market reason you should not be able to profit monetarily from your identifiable health data, there are definitely -- not arguably, but definitely -- some applications that require large numbers of data points from specific populations. The only place researchers can get this information without excessive time and expense, and/or running afoul of ethical-research considerations, is to license the data from a large databank -- a publisher of medical data. This is, in its essence, the real strength of integrated, standardized EHRs.

The financial model that I expect to develop is that of an EHR that is free, or near free, to patients (or covered within your medical insurance payments), but only allows you to see your own data; covers providers' patient-record access fees (a higher rate per record) through the patient's medical insurance (or added to the provider's itemized bill), and supported primarily through aggregate-data requests (cleaned data) from researchers (medical, sociological, pharmaceutical, etc.) at a higher price rate yet. In order to participate, you would need to sign a release allowing the EHR provider/health database the right to redistribute non-individually-identifiable information the same way Google and other web sites sell aggregate visitor data.

Carla said...

Oh god thats horrible cant we sue them