Will patient-generated data from HealthKit reshape the EMR?

By Jonah Comstock
10:08 am
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Apple Health AppSome industry stakeholders from providers to investors to consumer device makers think something like Apple's HealthKit could be the catalyst that finally brings the patient -- and patient-generated data -- into the healthcare ecosystem in a way that electronic medical records have persistently failed to do. While the conversation at Jannssen Labs and Johnson & Johnson Innovations' Digital Diagnosis event in Cambridge, Massachusetts this week ranged over an impressive number of topics, HealthKit and EMRs were two of the big themes.

"I really believe this Apple HealthKit thing is a transformational opportunity," Andy Palmer, a serial entrepreneur and healthcare seed investor, said during a panel discussion. "Credit to Microsoft and Google for trying with HealthVault and Google Health, but the time has come now, and all that patient-generated data has a safe place to live in HealthKit. The Google guys have to come back with something on Android and that competitive dynamic is really going to deal with that opportunity. Because all that data that’s being generated can’t live in an EMR. They don’t want to manage it in any way, shape, or form."

Palmer was joined by Boston Children's Hospital CIO Naomi Fried, Microsoft Healthcare Strategist Clifford Goldsmith, and John Wilbanks, Chief Commons Officer at Sage Bionetworks, a nonprofit focusing on changing the way healthcare data is collected for research. The panel was moderated by Chris De Luca, digital innovation lead at Johnson & Johnson.

Palmer and Goldsmith led the charge against big EMR vendors like Epic, with the latter suggesting that the US government's early prioritization of EMRs has led to a point where one of the groups with the most power over what innovations take hold is also a group with the greatest interest in the status quo. 

"The challenge you’re going to face is that the EMRs that dominate the hospital already control [what software can be used], and many IT directors still wait on those EMRs," he said. Later in the discussion, he added, "I think what happens is they’re very, very slow to change. The people who owned the vacuum tube, the RCAs of the world, didn’t want to give up on that. They continued to make big radios out of wood, while the Japanese made smaller transistor radios that were affordable. That’s a disruptive technology. And that’s what I think we have to look for in that industry. What could change everything?"

To make matters worse, Palmer pointed out, EMRs have had very bad luck creating patient portals that actually promote patient engagement. And, as Wilbanks mentioned, they also suffer from accuracy problems.

"We would not accept the errors in our banking records or our credit records that we accept in our medical records," he said. "That’s just sort of a shockingly depressing statement. If you do research on EMRs you find out pretty quickly that 20 to 25 percent of the record is wrong — entered wrong, translated wrong. It’s ridiculous that in our consumer lives we have this incredibly well-mediated experience and in our healthcare lives we don’t. And we sort of accept it."

Wilbanks gave an example of a legacy technology that could be made both cheaper and more effective with already existing mobile technology, and with a model by which a person owns their own data and chooses to share it with a clinician.

"A lot of things that patients get reimbursed for are really gauzy handwavy things," he said. "My favorite is the gait test in Parkinson’s, which is a reimbursable test. It’s a scale of 1 to 5 that I assess based on how well I think you’re walking today. 1 - 5. That’s as granular as it gets for a test performed by a skilled neuroscientist, who then gets reimbursed. And what we can do is send a notification to a phone that says 'holding the phone in your right hand, take 20 steps forward and 20 steps back', scrape the gyroscopes and the accelerometer, and get a much more quantifiable version of your data. [We can do that] every week for a year and measure progression, when you’re not paying attention, as opposed to when you’re in the office trying to impress the neuroscientist who’s getting paid. We get that longitudinal data at zero cost because no one has to be reimbursed to run the test. And it’s mine and I get to carry a copy everywhere."

Fried, the sole provider on the panel, didn't really address EHRs, but pushed back on the notion that health data should be entirely out of the provider's hands. She spoke about how Boston Children's Hospital promotes physician entrepreneurship and focuses on technology -- like MyPassport -- that empowers and engages the patient, but still originates from the hospital.

"Don’t you want your doctor to know all about you and know all about all your conditions and to have the information from the other sources?" she said. "I don’t think most of us are going to go hopping from primary care doctor to primary care doctors. We usually have one primary relationship where we look to someone to really be our healthcare concierge and take care of us. That’s a hard job right now and it’s a hard job to do when it’s paper based or phone-based. And that’s what we need to do with solutions, and that’s where I see a huge opportunity. You can’t forget the role of the clinician, and in that sense healthcare and digital health is different from a lot of aspects of consumer health that you see."

Overall, panelists agreed that the only way to break the hold of big EMR players over the industry is to disrupt it so much that they have to get on board. Having a viable personal health record -- which Apple's Health app could become -- is a good first step in that process, but it's been tried many times before. The real disruptive innovation would be the bridge that connects a patient's personal cache of health data to their care provider effectively. And that's where panelists advised entrepreneurs to focus their efforts.

"I think we’re just at the tip of the iceberg," said Fried. "I think we’re very excited. There’s a lot of froth in the market right now. We have most of the work ahead of us. What’s exciting is that technology is not the limiting factor anymore. It’s now a driver, and the challenge is applying technology in a way that makes a difference to outcomes and safety and health."

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