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Time Capsule: Can EMRs Sweeten their ROI by Moonlighting as Research Databases?

December 30, 2011 Time Capsule 2 Comments

I wrote weekly editorials for a boutique industry newsletter for several years, anxious for both audience and income. I learned a lot about coming up with ideas for the weekly grind, trying to be simultaneously opinionated and entertaining in a few hundred words, and not sleeping much because I was working all the time. They’re fun to read as a look back at what was important then (and often still important now).

I wrote this piece in December 2006.

Can EMRs Sweeten their ROI by Moonlighting as Research Databases?
By Mr. HIStalk


I’d never heard of the Clinical Data Interchange Standards Consortium (CDISC) until last week. That’s when that group announced the kickoff of a new interoperability project, this one involving linking EMR systems to the information systems of clinical investigators who are performing drug or disease research.

The audience is researchers, the Centers for Disease Control and Prevention, or registries for patients or disease. The IHE is involved in the testing and will demonstrate the results at the HIMSS conference.

I’m not usually interested in this sort of project. I’ve seen first-hand what an insurmountable effort it can be just to get hospital systems to swap clinical data across the hall, much less with national third parties. Still, this is an exciting indicator of how quickly the now-common idea of interoperability has taken hold. If nothing else, RHIOs have made hospitals think about the value of their patient information and how to exchange it in standard electronic formats.

Getting and keeping drugs and devices on the market is expensive and information-intensive. Several small, highly profitable companies have sprung up to help enlist patients in studies, to do the rigorous paperwork required, and to design research methodologies. Their key commodity is information.

Hospitals have patient information that’s available nowhere else, the kind that arouses researchers and manufacturers that have far deeper pockets. Repurposing that existing information by making it available to those willing third-party customers, even when motivated purely by mission-supporting cash, is at least more beneficial to society than running a McDonald’s or building medical office buildings.

Let’s say your hospital implements a well-integrated, information-rich EMR system that can easily tie together everything about patients from medical history to demographics to procedure history. Suppose you add genomic data to the mix, storing information about family history, lifestyle, and a longitudinal history of disease, treatment, and outcomes. Your patients will benefit, but the information has an equally high value to those third parties trying to assemble or execute big research projects.

Drug companies and device manufacturers need the data that lives in your clinical systems. How else will they be available to target research to a very narrow range of patient types, maybe even those with a rare genomic profile? It could help them identify appropriate research subjects, design post-marketing surveillance, study population-based outcomes, and catalog adverse events. The information you provide could either be de-identified or made available only if individual patients opt in. The benefit to patients is access to a wider variety of treatments and protocols, most likely free to them if tied to a research project.

You wouldn’t just give that information away, of course. Hospital information is far deeper and more detailed than what’s available from any other source, with a wide scale to match. All you need is sophisticated EMR functionality and a relentless push to get every scrap of clinical information codified, categorized, and cross-referenced.

In the movie Wall Street, Gordon Gekko says, “The most valuable commodity I know of is information.” That’s true of clinical data, especially when those who value it can pay. Just don’t sign away too cheaply the rights to your treasure trove of data, even if the interested customer is a RHIO or third party data vendor.

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Currently there are "2 comments" on this Article:

  1. I agree. Patients need to opt in. It can be a huge source of outcomes-based studies to physicians as well as post-marketing studies for industry. It also has implications for IT companies in that they may study EHR workflow utilization.

  2. Data has value, but to whom does it belong, and who should be allowed to make money on it? If, as a patient, I have an interesting condition pharmas want to know more about, I’d like to get paid even if my data has been deidentified. Same if I am a clinician doing the analysis that led to the data creation. How about microbilling where different data contributors get royalties into their PayPal account?

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