From outside of Health IT, our jobs IN Health IT look really simple. I mean, it’s obvious to EVERYONE that there should be a computer on everyone’s desk, right?

Sure. Everyone else but doctors, nurses, and technicians that have their hands full with delivering care. If they scrimped on that part, we always hear about it. Additionally people are willing to accept ‘risks’ when they are just that general — when you get into the specifics of incorrect data, coding, data sources, and possible injury — are they really willing to accept the REAL risks? How about the case in Virginia where someone held a prescription data file hostage — would you feel OK if your information was compromised? Or would you turn on the very system that you gave the go ahead? These are the questions that professionals in my field face (and honestly they are questions that keep me up late at night worrying about).

What I’m concerned about ARE definitions like meaningful use. For instance — interoperability sounds REALLY good, the actualities of implementing it are extremely complex. You would need to arrive at a national data standard, adhere to it, and make everyone else adhere to it, too. Would this include private clinics? Who would be required to adhere to it, and how would it be monitored? It’s hard to get one system to talk to another via HL7, much less introduce every other system in the United States.

I can make databases talk to each other — the art comes in making them not say four letter words. For healthcare, it’s not that we are lacking technology. We are lacking people with implementation experience, and we are lacking an overall focus on real standards, and not just cute catchphrases.

I really believe in what I do, and I really want it to make patient care better. Part of my concern about overall data sharing comes from physicians themselves — often, THEY want to ‘own’ that data, when in reality it is a joint ownership — where the patient has a huge stake. And, it’s easy to sign a form consenting to research without even realizing it during the intake process.

This is a really great look at what the future holds, but I would be much more likely to buy into the concept of CER if data in ONE CLINIC could be absolutely clean 100% of the time — and that is simply not the case. Then you add in all the EHR flavors, all the people who use it — and you end up with a field very difficult to standardize.

The current reporting standardization that you see in place is normally met by extreme amounts of data transformation, and usually a large scale amount of registrars and other FTE’s that have to get the data into that format. . .

Anyway, just a few thoughts from my lunch break. . .

I just returned from a summit on rare disorders in DC and this was a topic of great concern. 70% of the medication prescribed for patients with rare disorders are prescribed off-label and because of insurance limitations many of these diseases may not be properly identified in databases. The discussion centered around how to change the process for getting new therapies through the FDA when having a two armed multi-thousand person study is not possible. All of this without compromising the safety and efficacy of the therapies. With patients with rare disorders comprising upwards of 30 million people this is a big issue.

One quote from an FDA spokesman I particularity liked was that most of the science we have learned about how the body works we have learned from studying patients with rare disorders. It is at this end of the spectrum that innovation happens. It would not be good for anyone if comparative effectiveness ends up compromising or even worse stifling innovation.

CER and EBM are closely related and both enabled by digital content. For now, most EBM & CER is based on RCTs (I looked over one recent very long CER study on arthritis of the knee on AHRQ’s site: http://bit.ly/E3TFH ), but as you point out, with more digital content being generated via EHRs and disease registries, more comprehensive studies will be possible. How they will be used & regulated is an open question.

You’ve provided a great jumping off point to generate discussion of CER and EBM in your post. I’m working on an article related to this topic this week. I’ll post a link here and on Twitter (@janicemccallum) when it’s completed.

Also, you may find it amusing that one of the working titles I have for our fall Health Content conference is: “Health Content: The Meaning in Meaningful Use”.