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One-on-One With Seattle Children's Hospital CIO Drex DeFord, Part I

November 10, 2008
by root
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In this part of our interview, DeFord talks about his organization’s plans to leverage PHRs for disease management.

Seattle Children’s Hospital serves as the pediatric referral center for Washington, Alaska, Montana and Idaho. The organization’s facilities include 250 inpatient beds, a Level IV Infant Intensive Care Unit, Surgical Unit, Pediatric Intensive Care Unit, Inpatient Psychiatric Unit, and Rehabilitation/Complex Care Unit. HCI Editor-in-Chief Anthony Guerra recently had a chance to chat with CIO Drex DeFord about his work at hospital and industry trends.

AG: Tell me what your thinking is these days on PHRs? I did an interview with Paul Tang, and we talked quite a bit about PHRs. How might CIOs be preparing for patients coming in with PHR data and having to be concerned about the validity of that data, and whether or not a field has been modified by a patient; how do you separate data, how do you deal with quality?

DD: That probably is an interesting place to start. All of those are definitely issues. I guess, first and foremost, just starting off with the basic how do you make PHRs work in a physician’s workflow when they’ve already got a lot to do, and this is one more thing to bring up on the screen and have the patient log into, or are IS departments going to have to build lots and lots of connections to lots and lots of different PHRs, as they evolve. And what about building connections so that the data in the PHR is available inside the electronic medical record, which is a more normal part of the workflow process.

I think I know some people now that are doing things like that, where there is a tab in the EMR that you can click on and you can see whether the patient has added specific information for their record. For example, if they’re diabetic and they’ve been uploading their data to the PHR, so it’s available for the physician to see, but it’s specifically identified as external information; stuff that came from the patient that’s not from an internal hospital system.

So I think it’s important that those things are very clearly identified. And then, I agree, I think there’s got to be some sort of indicators that, as we have connections to those PHRs and we write data back to the PHR, if that field is a field that is available for a patient to modify, and if they modify it, it’s been flagged as modified. I think that when you have the folks from Google and the folks from Microsoft and lots of others out there right now that are building PHRs, because they work through this, those are all big problems and concerns they’re going to have to deal with: what fields can be modified, what can’t, how they’re identified and marked up and all of that.

AG: And that’s going to have to be so crystal clear and uniform so doctors can trust the PHR information, correct?

DD: Yes, we’re entering a very complicated piece of the business. The other piece of this is, as patients put data into PHRs and that PHR data, can that data be used for research purposes? There’s probably a lot of things that PHRs will need to address, and PHRs will have to evolve over time so that patients can opt in or opt out of things. “I do want this piece of information shared with my provider and anyone who he refers me to, but I don’t want this piece of information available for any medical research projects that may be occurring at that facility.”

Again, it’s complicated, but you see where I’m going with that too.

AG: Sure. That’s one of the areas that people think PHR funding could come from, but there are many people who would never accept their information being shared under any circumstances.

DD: Yeah, I’m with you. I think there’s a lot of thought about how do you take a PHR and make it a money-making venture. At the same time, I’ll tell you as I sat there with the folks from Google and Microsoft a couple of weeks ago, their concern, really, was more around how do we get people to actually use this first, and then how do we compete with each other and figure out how it’s going to make money. For me, personally, one of the first big humps to get over is, how are you even going to get people to use it?

I think there might be some niche category of patients that have chronic concerns that, if you can figure out how to demonstrate value to them through a PHR, they will use it, but for the population, in general, I’m not sure. I am definitely a little challenged around what’s going to be the motivating factor to put them in a position to say, “I’m going to use this every day; I’m going to update it regularly; it’s going to be part of how I live my life.”

AG: Would you agree with the statement that probably 90 percent of your colleagues are not even concerned about PHRs because they have so many other in-house things to do first?

DD: No, I’m not sure I would agree with that. I think that PHRs are on most CIOs’ radar screens. We have a project that is just getting started with (Microsoft) HealthVault, specifically to build an application that we’re calling Passport, that will allow kids to upload their diabetes information and do medical education and maybe somehow get some sort of a prize or something, on the back end of it, if they’re compliant.