Judy

I have to agree with Gilles that the possibility of compensating patients for using their aggregated de-identified data is remote. (Can we get the credit score companies to compensate us, too?) But, that doesn’t mean it’s not worth raising the bar on the issue. Note, de-identified prescription sales data has been a big business for a long time (IMS Health).

Have any of you read the Google Health Privacy Policy? Google says it “will use aggregate data to publish trend statistics and associations”. In the digital world, most everything we do can be captured electronically & aggregated into databases for analysis. In most cases, the subjects whose behavior is captured not only do not receive compensation, but often they are the target market for the product built upon the analysis. (Think industry surveys & directories.)

So, in the case of large-scale de-identified databases, I am afraid I think it is more likely that we will pay directly or indirectly for information gleaned from our health care records than it is that we will be compensated for the raw data we contribute. The exception could be focused clinical studies where researchers require more direct participation from patients.

On the bright side, the depth and breadth of data available from digital records from large populations of patients should contribute significantly to medical research. Dave, I like your idea of requiring free analysis tools (and access to the data) to patient communities. It is consistent with the call for open access to research financed with public funds.

come on, be serious! Or as Cerner would certainly tell you,”Don’t worry! Be Happy!” They are selling “deidentified data”. You can rest assured that their lawyers have already looked into the right terminology that gives them:

1./ The right to steal your data, and,
2./ The legal protection in case you disagree with their business model.

Nonetheless I think we should raise the bar on this issue. As I said to Sherry earlier, I am planning to write a follow up post, this weekend.

I wonder if they’d be willing to donate the proceeds (after expenses) to patient communities. Or to create some pro-bono data analysis tools for patients to use.

I imagine I’ll get some cynical responses but really, I wonder.

http://www.ihealthbeat.org/Articles/2009/6/1/Cerner-Markets-Patient-Data-to-Drug-Companies-Researchers.aspx

“Health IT firm Cerner is marketing data from the billions of anonymous patient records it has at its disposal to pharmaceutical companies and researchers, the Kansas City Business Journal reports.

Cerner’s data warehouse includes 1.2 billion lab results, as well as smaller numbers of medication orders and other data. The firm collects the information through data-sharing agreements with about 125 of its software clients.

In a statement, Cerner President Trace Devanny said that although the LifeSciences Group is a “minor contribution to our bottom line,” Cerner views the division as a “key component of our long-term global growth strategy.”

His point is that if we don’t have the raw data, then new discoveries are impossible, new insights are impossible; our future knowledge is limited to previous people’s interpretations. Unlock the data.

Ending DbhD (or even DhD…data-hugging disorder) is a cousin of that sentiment.

Regina’s words are powerful.

Although I believe that commercial publishers should value databases that they compile and maintain–and charge appropriately, I am enthusiastically following the trend toward govt-produced data and other publicly-funded databases being made openly available. Here’s what I wrote on my blog that links to this article:

A new condition of interest to data publishers: Database Hugging Disorder (DBHD). Humor aside, this post addresses trend toward allowing access to the databases that were used in medical and other studies. In line with the Open Access movement in scholarly publishing that campaigns for free access to research articles where the research was funded with public funds, the open database movement seems to be growing very quickly. Oddly enough, even though the databases hold more value than individual articles (especially when data can be combined from multiple databases), the fact that they haven’t been monetized in most cases may lead research organizations to be more willing to make them freely available while still charging for published artciles based on the data.

“Database-hugging disorder (Dbhd): A well known ailment, Dbhd is the statisticians’ tendency to guard their data because of concerns about budgets or misinterpretation.”

I believe there are other database huggers beyond statisticians. I believe there are providers who have a vested interest in making sure both patients and payers don’t see the data, because there is fraudulent, reimbursable (but not real) information in there.

Once patients can see their records, and can exclaim things like “gee – I don’t ever remember having that MRI!” or “the doctor never told me I had _____!” then all bets are off.

Those aren’t concerns about misinterpretation. Those are concerns about getting caught.

AND, those are concerns about figuring out how to replace that previously available, non-transparent income stream.