Dale Sanders is the vice president and CIO of the Chicago-based Northwestern Medical Faculty Foundation at Northwestern University, affiliated with 897-bed Northwestern Memorial Hospital. He recently spoke with Healthcare Informatics Senior Editor Daphne Lawrence.
DL: Okay, so exactly what ARE you doing with genomics, or is this still a process in the works?
DL: Even if it’s not in the EHR yet, for CIOs to begin to think about incorporating the genomic component of healthcare, what do they need to know?
DS: They just need a means to take the patient’s genomic and familial profile and match that up against what we know about genomic medicine now, and present that back to the physician in some form. For us, it needs to be the EHR. For other organizations that don’t have an EHR, it could be another format. You have to have some way to collect the information about the genomic profile or the patient, or the familial information.
DL: And you could use a PHR like HealthVault or something for that, too?
DS: You could take the content captured in a personal health record, as long as there was a familial content to that. Or, as is now possible, you can go to commercial genomic screening companies, submit a biological sample, and they send back the genomic profile and I can put that into Microsoft HealthVault. In the absence of an EHR, if a patient has a PHR and they had proactively participated, then HealthVault will allow you to present that data back to the provider.
DL: So who’s doing something really exciting in this space?
DS: It seems like Partners (Healthcare) is furthest along in terms of thinking and execution. No one’s really great at this yet. But there are a bunch of things you can do as a CIO.
DL: That’s what I need to know.
DS: All of this is based around the collection and manipulation of data. There are new tests in the laboratory, for example, so your lab has to be geared up to start generating genomic content. And even though that doesn’t always feel like an IT issue, if you’re a CIO that has a business mind about this system, you start talking to your lab directors and asking ‘are we starting to build up the capabilities for those tests?’ You have to have a strategy for building your genomic content. If you can’t do the tests, you can find out where to do them. So when patients come to you in the future and say, ‘I want genomics as part of my medical record,’ it will be a natural part of the care process.
DL: What about the business case?
DS: That’s the other thing I try to do as a CIO: raise the awareness of how we have to integrate. There are disparate strategies between the genomics folks, the lab folks and the operations folks. As a CIO, I see this essentially as a data problem. So as CIO, I should play a role in this data collection. So what I’m trying to do is pull all the folks together, work with the lawyers on disclosure, work with the center on genetic medicine to gear up to accept the volume of genetic medicine. On the clinical side, we’re building the enterprise data warehouse where you can match clinical outcomes data with genomic data and rapidly assess phenotype.
DL: You have an enterprise data warehouse?
DS: Yes we do. I think as a CIO, you end up becoming the data visionary. You can say this is about data management collection and content; you don’t want to be a passive participant in that. If you’re the guy responsible for data in the organization, go out and build a sense of awareness on your business units on the importance of the data in the supply line of personalized medicine. That’s what a CIO ought to be doing.
Another tangible thing you can be doing is working on familial data collection. What typically happens in an organization is that patients fill out a family history of disease. That history is never converted to a computable form that you can run decision support and data analysis on. So one of the simple first things you can do is computerize familial data collection, and there’s a nice tool from the Department of Health and Human Services that’s open source. We’ll be using that. We’re encouraged by that open source initiative. I’ll be really disappointed if we don’t have this running in six months.
The other feature that’s within a CIO scope of influence is patient-reported outcomes. That’s another accelerant to personalized medicine is the patient’s reported outcome from treatment. We don’t close that loop of data now, and that needs to be computerized, too.