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Can EMRs Moonlighting as Research Databases Sweeten Their ROI?

December 26, 2007 Editorials 4 Comments

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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Currently there are "4 comments" on this Article:

  1. You bet!! In spades and it would be a great way to fund IT …since it’s clear the Feds really won’t. Hey, drug compamies are really the only ones making big profits on the federal health dollar, so lets get some from them!

  2. From 1985 thru 1997, Health Laboratory Research Institute had populated a private self payor database of over 95 diagnostic laboratory analytics. From a pure research perspective to defining translational diagnostics, knowing the run values of your albumin to very low density lipoprotein could be of great value for approximating human homeostatic physiology.

    But then again, who really cares if there is no money to be made?

  3. A large Medical Center in central Wisconsin has already accomplished this integration. They have been a leader in research studies. Most of their success has been based on the totally electronic record they have developed for their Clinical practice. The database contains all the information that is needed for their epidemeolog y. Study participants in almost all cases have a history built within the EMR which contains millions of patients throughout Wisconsin and other states. Participants can consent to release of their entire medical record for research. The Personalized Medicine Research Project allows researchers at Marshfield Clinic to learn more about how genetic alterations cause diseases, how to use an individual’s genetic information to predict which diseases he or she is likely to get, and which medications work best for a particular person. For more information on how these systems are all tied together see: http://www.marshfieldclinic.org/research/pages/index.aspx

  4. It’s interesting what cycles back through this industry. This extra ROI from research has already been tried as a way sweeten the ROI pot in academic medical centers. This happened in the late 80’s, in the early days of basic order entry & results reporting. One intended extra ROI was to come from providing an edge in winning grants through lower cost data accumulation . It didn’t work out very well. The clash between the IT factions was basically fatal. The clinical systems team had to design and tune the database for speed within an operational support application. The research informatics team needed a data rich relational environment available for large ad-hoc extraction routines. 10:00AM when doctors were rounding and the research team fired off a query for all patient lab results for the last 3 years was always a nightmare. The hard money from keeping attendings happy and the practice program revenues up won out over the soft money from research.

    There was also a more subtle flaw. The desire to continue to pack things into the basic OE/ R – EMR design in order to to pick up all the extra potential pieces of ROI in order to pay for front-end costs. Imo, this has led to a tremendous overengineering – if the original objective was to support clinicians in day-to-day care delivery – and projects-that-never-end phenomenon. In the run-up of design with the intent to reach a “critical mass” of functionality necessary for lots of buckets of benefits to accumulate a positive ROI, we continually forget that in physics critical mass is when things explode. Which they do in overly complexed EMR projects too. It usually takes about a 7 year cycle to forget and the complexity to return. E.G. CHINs to RHIOs

    Obviously, the advances in architecture and increases in computing power and storage could address the first problem. But, over the years EMR projects have taken on a life of their own. The sunk cost – $, emotions, egos – prevents returning to the original design questions and objectives. It prevents the potential for rethinking the answers and adopting new tools to achieve the core objectivs. Instead, one vendor with a data processing architecture is abandoned for another. And so cultural clashes over objectives and priorities continue, if not getting worse. I think we would be best served if we followed Antoine de Saint-Exupéry’s advise: “Great design is not when there is nothing left to add but when there is nothing left to take away”. That is, let’s get “hospital systems to swap clinical data across the hall” and then move on.

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