The issue will be how to collect data from our practices; you want to fully protect the privacy of both patients and physicians, yet ensure that you still collect enough useful data for analysis.
I am a co-investigator in two studies that have recently received funding:
- Canadian Primary Care Sentinel Surveillance Network (CPCSSN), and
- Development of an Electronic Medical Record primary care research database, at ICES
The benefit is that you can collect data from several different EMR systems (as we have a tower of Babel of EMR systems in family medicine). The drawback is that you depend on local investigators to try to collect data from their EMRs, and that you are pretty limited in terms of what you collect. You have to say what you collect at the beginning; if you forgot or just couldn't get something important, you don't have it in your database.
For the ICES study, we will explore anonymization software; this will allow, in the future, collection of the entire EMR database while protecting privacy. All names and identifiers are scrambled; after this is done, no one has access to the scrambled data, except for an ICES analyst. Researchers only have access to data after it is analyzed (once they obtain permission), and only for larger groups of patients, never for a single record. In other words, what you get is things like x% of patients in this geographic area have diabetes, y% were prescribed a cholesterol drug, and z% have a cholesterol level that is at goal.
The benefit is that you have a fairly complete description of care; if the database is mirrored (sent automatically to a second server), data collection is on-going and is pretty much live. The drawback is that the anonymizers will have to be programmed for each EMR software, since they all work differently. You will only get data from a select group of physicians, and there will have to be some extrapolation and assumptions if you say that the data represents an entire population.
Because the practices in my group are run remotely out of a single server, we can collect data without having to personally go to each office and access the server. In fact, the amount of bothering physicians, staff or patients is pretty much zero. Ideally, that is the way it should be--we're busy enough during the transition without imposing more work related to research. We will have posters informing patients, and giving them the option of opting out.
I do not know which way is best, and I think these two projects will test both approaches. We will start small, and go slowly and carefully; it may well be that we need a variety of approaches for data collection.
It is very interesting to me that some of the ground work that makes this possible started out of our group Quality improvement initiatives. We wanted to use our common EMR to improve our preventive services, and our diabetes care. Out of that came the realization that data could be collected remotely, and we also learned how to do it.
Research is difficult and time consuming. You also have to go through a Research Ethics Board, and there are lots of forms to fill out. I am not saying this is a bad thing, although sometimes it is very bureaucratic and it doesn't always make sense. Quality Improvement does not require all this overhead; in fact it works better when you have a goal, try small things, see if they work, then fix problems and keep going. This is called a Plan-Do-Study-Act cycle (PDSA); much of what I learned about collecting data in my group's EMR was through that process. For Research, you have to plan thoroughly, apply for your grant, hope it gets accepted, then implement and hope it works. This is not a great way to start something with as many unknowns as EMR data collection. We probably need to re-think the interface between Research and QI.
As for me, I think I probably have something to contribute to this nascent EMR research enterprise. I have now finished the coursework for my Masters, and am writing my thesis (on the Effect of EMRs on preventive services in a Pay-for-Performance environment). I have asked my University department for a second day of research, and will take Wednesdays for this, as of September. I'll practice three days a week, and devote two days (and some evenings and weekends) to research. I have asked for permission to join ICES; we'll see how things go.