An ongoing study that enables cardiac patients to review data from their own implantable monitors may also help the doctors treating them.
That's the hope of Michael Mirro, MD, a cardiac electrophysiologist at Parkview Physicians' Group in Fort Wayne, Ind. Mirro is spearheading the study, funded by part of a Challenge Grant from the Office of the National Coordinator for Health IT, that is looking closely at how patients react to data fed from their implantable devices into their own personal health records.
Twenty patients with ICDs developed by St. Jude Medical signed on for a remote monitoring study that sends device data directly into their NoMoreClipboard PHR.
Aware that there was dissatisfaction among many pacemaker and defibrillator recipients about the level of information they're privy to regarding their device's operation, Mirro thought there would be a good opportunity to do a better job getting them this data.
As the devices are remotely monitored in a patient's home, "a modem near your phone would wirelessly interrogate the device and send information to a server that then pings a clinic," he said.
Thanks to an IHE profile known as IDCO, which stands for implantable device cardiac observation and "which is now an IEEE data standard to transmit structured data out of an implantable device – a pacemaker or defibrillator – directly into an electronic health record," Mirro's patients were streamed critical data about their devices' functionality.
Devices were monitored at home by a modem that sent data to a proprietary server at St. Jude Medical, said Mirro. "The data that's in the server then goes directly, using that IEEE profile, to the HIE, then goes to Cloverleaf (Infor's integration engine) in our health system, then to the MIE Webchart EHR and NoMoreClipboard PHR simultaneously."
By deploying data filters – "there are, like, 450 data elements" – the process can break it down to very easily understandable profile the patient can understand."
The project tells patients four things about their device, said Mirro: "What their battery life, how many months their device has; whether their pacing lead is intact – it gives actual electrical resistance, but explains what it is; it tells if the shocking leads are ok; and it lets them know if they've had any life-threatening arrhythmias that need treating."
In other words, "if you thought something happened to you last night – you woke up and thought you got shocked – you could go to your computer, log onto your PHR and find out," he said. "You don't have to call the clinic and have them go into the server and find it and construct a message to you. With the IEEE profile, it's not only machine readable it's human readable information."
Patients who'd like a more detailed view of their device "can click and get the full report, with all the data elements, that tells them absolutely everything that's in their device," he said.
The first phase of the project was so encouraging, Mirro said, that Parkview has embarked on a bigger phase, with 300 patients, working with Epic and its MyChart PHR.
"The patients are overwhelmingly excited about this," he said. "They say, 'This is amazing. I've always wanted to know more information about my device.'"
"Clinicians often tell us that tools like PHRs are a great idea for others, but their patient populations won't use these tools based on age, income or inability to use technology," said Jeff Donnell, president of NoMoreClipboard, in a statement upon the completion of the first phase of the PHR case study.
"Our experience with (Parkview) patients and with other clients who serve patients who supposedly reside on the wrong side of the digital divide tells a different story," he said.
Mirro, too, bristles at the notion that cardiac patients, most of whom are elderly, are not interested in engaging with technology at home.
"The stereotype is that they're not connected people – that's bull," he said. "Some of the assumptions about the over-65 age group and their connectivity are not true. With some minor training, they're very engaged."
Still, some clinicians were skeptical of the project when it began.
"The doctors were all very nervous about this: 'What do you mean, you're going to give patients their data directly?' said Mirro. "Well, first of all, it's their data. But there were fears that maybe this would stimulate a lot of patient calls to the clinic. So far, that hasn't happened."
"Our hypothesis is if patients get this data directly they'll have fewer questions about their device and won't need to come to the clinic as often," he said. "I think it will benefit the healthcare system. I think patients will use less resources."
Meanwhile, Parkview is in discussions with other medical device manufacturers and health IT vendors to broaden the scope of the project.
"We're planning on doing this with other device companies besides St. Jude," said Mirro. "My hope is to try to get a critical mass of EHR vendors."
(Editor's note: This story was edited from a version that first appeared in Healthcare IT News, a sister publication of the HIMSS Media Group).
