Inside Healthcare Computing has graciously agreed to make previous Mr. HIStalk editorials available from its newsletter as a weekly “Best Of” series for HIStalk. This editorial originally appeared in the newsletter in December 2006. Inside Healthcare Computing subscribers receive a new editorial every week in their Electronic Update.
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 might be 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 a standard electronic format.
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 with 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. All of that could be used to the advantage of your own patients and institutions, but it 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 specific 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 is true of clinical data, especially when those who value it can afford to 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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