CIOs still have concerns about using patient-generated data

By Jonah Comstock
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One of the many tensions in digital health is between innovators with big new ideas about new streams of data and doctors and CIOs who have to figure out how to use that data and integrate it into their workflow. At the MassTLC Healthcare Conference in Boston today, a panel of hospital CIOs discussed some of the challenges inherent in being a part of group number two.

"The thing about this is, if I have a patient who goes in for one day and comes out, for an asthma visit, and I get that full summary, it’s pretty basic, I can flip through it in two seconds," Dr. Michael Lee, the director of clinical informatics at Atrius Health, said. "But if you have a patient who’s in for six weeks, 99 percent of that information we actually don’t want. So how do we convince them not to send some stuff? What stuff are they supposed to filter out?"

Lee used the example of a diabetes app his practice launched. Epic wanted them to bring all of the patients' glucose data into the EHR via HealthKit and Epic MyChart.

"That’s a huge undertaking for me," Lee said. "And as people get to CGM, that’s millions of datapoints. Instead, we just built a web portal to their application. So that we can see it whenever we want to see it and all the data stay in their application. I’m not bringing anything in. Is that interoperability? We think it is and we think it’s working great, but I’m not pulling data. It’s not semantic interoperability. I don’t need to do that, the app company’s already done that."

Semantic interoperability means that different systems in the hospital don't just share data but have all their data standardized to the same formats, so they can read and write data to one another, avoid repetition, and spot conflicts. But doctors on the panel argued that on a case by case basis, that level of communication isn't always necessary, and can even do more harm than good. That's because when doctors are expected to be continually monitoring patients, they can then be liable for missing a warning sign -- even one that an algorithm somehow missed that came in the middle of the night.

"I think everybody faces the same problem: where do you draw the line between what you want to inform people of and what you don’t?" said Arthur Harvey, the CIO at Boston Medical Center. "...No matter what you do, somebody will find a way to break it and it’ll cause something to get missed. You have to avoid giving the patient the expectation that this is being continuously monitored."

Lee said that even on the level of a patient portal, hospitals have to worry about the liability if someone sends a message to the portal about chest pains in the middle of the night instead of calling 911. 

"People always ask what about that patient that sends a message over the portal at 2 am?" he said. "Nobody looks at that message. But what’s telling that patient that 'You have to make a decision for yourself', that 'We’re not connected to you 100 percent of the time'. We disconnected that glucose monitor because we’re telling them, this is your application but we can share it with you at times. But that’s a hard message."

Other times, even when there is value to patient generated data, figuring out how to incorporate it into other existing data streams can be a challenge. Bill Gillis, the CIO of the Beth Israel Deaconess Physicians Organization, used the example of the heart rate tracking on a Fitbit device or Apple Watch. "You can make a case there’s some value there, but how do you weight that?" he said. "How do you measure the value of heart rate from a Fitbit vs the EKG machine? And then how do you score that in a quality measure?"

For Lee, Gillis, and Harvey, the takeaway is that visions of interoperability only have value if they're undertaken with a consideration of the physicians -- how much extra work the data will create for them, and what value they'll actually gain from it. For many cases, that value just hasn't been proven.

"I don’t think anybody wants Fitbit data," said Harvey. "Print a summary once a year so your PCP can see a gross number of steps or something, but for me that’s about the right level for that kind of stuff."