Challenges for patient generated health data
By Aditi Pai
Although patient generated data creates a fuller picture of a patient's day-to-day life, there are various challenges for healthcare providers to get over such as maintaining privacy and security, dealing with expenses, and convincing physicians that the device data is useful, trustworthy, and manageable.
For patients, there's a risk that more organizations than just a health provider will ultimately see that data. A survey from San Diego’s California Institute for Telecommunications and Information Technology (Calit2), funded by the Robert Wood Johnson Foundation, found that 90 percent of respondents said it was important that their data remained anonymous before agreeing to make their self-tracked, personal health data available to researchers. Additionally, 13 percent of respondents specifically mentioned an aversion to commercial or profit-making use of their data.
Organizations that could potentially benefit from this data include employers and insurance companies. Of course, there's also the off chance that data will also be leaked by accident, as it was in 2011 when news broke that Fitbit user profiles were available publicly, and with the profiles was information about sexual activity, weight and other sensitive metrics.
Even if patients trust where their data is going, the costs for sending this data to healthcare providers are steep. Most devices connect to smartphones, so communities in which smartphones are not commonplace -- and health trackers are even less so -- may have a more difficult time providing information to physicians.
On the healthcare provider's side, there's the issue of piling on more costs in an effort to integrate this data into the patient's records. Association for the Advancement of Medical Instrumentation VP of Standards Development and Emerging Technologies Joe Lewelling said at the mHealth Summit near Washington DC last year that the immediate costs to bring interoperability to medical systems are a significant barrier.
“I think we can all see that in the end we’re going to save money,” Lewelling said. “But there are going to be a lot of transactional costs before we reach that point. And there are going to be transactional costs in terms of patient safety because any time you change technology, you have to change behaviors.”
He added that while some patients can manage their own healthcare, he believes there are others out there who can’t and for them the question might be, “how do we assist them?” and “how do we educate them?”
Companies similar to Tyto, which offers users a handheld device that can help patients examine their mouth, throat, eye, heart, lung, and skin, might be one answer to Lewelling's question. These exams can be guided by a physician online or guided by the device offline.
Trusting the Data
Although, there's also the issue of getting physicians and other care providers to trust the data that patients provide.
Rick Valencia, Qualcomm VP and general manager of Qualcomm Life, said that the biggest concern from doctors is trusting that patients took their own health readings correctly or aren't accidentally submitting readings from someone else.
"Health systems and doctors have been trained for the one on one interaction," he said. "So just shifting and saying now we're going to do that remotely and we'll send it all to you? Doctors aren't going to embrace that until they know exactly where it's coming from."
Physicians may be more willing to trust a digital health tool's readings than a patient's manual entries. When pharmaceutical company Sanofi and its partner device maker Agamatrix launched IBGStar in May 2012, a smartphone connected glucometer, the companies included a feature that differentiates glucose entries. Readings from the iBGStar device are that are automatically loaded into the app are “locked” in so users cannot edit them and are indicated by a lock symbol on the corner of the user's scorecard. Manually entered readings are marked with an “x” to indicate that they are editable and were manually entered. This feature suggests that Sanofi thought healthcare providers would be interested to know which readings came from the device and which were not edited.
Two years later, care providers are still having trouble with integrating a patient's self-reported data in to a patient's medical record. This year, physicians at PinnacleHealth have started to recommend that patients track vital signs like blood pressure, heart rate, or activity and the health system has included a space in the portal for patients to enter that data and track it against goals.
Although currently patients mostly enter the data manually, the health system is working on integrating with devices so patients can enter data automatically from smartphone-connected fitness trackers or health devices. Still, PinnacleHealth CIO Steven Roth said at HIMSS in Orlando, Florida that they aren’t currently moving the patient-generated data into the EHR, so the doctors have to log into the portal to access the information because doctors are hesitant about making manually entered patient data part of the patient’s legal medical record.
Chris Wasden, Innovation Practice Leader at PricewaterhouseCoopers, echoed those sentiments in an interview with MobiHealthNews at HIMSS last month, in response to a question about data from consumer health trackers.
"A clinician doesn't want a copy of this information," he said. "There's a risk issue -- they're afraid if they have this information and didn't act on it they could be liable. But also most information we collect is low-risk and not very actionable. So there's a whole bunch of reasons why clinicians don't want this information. It doesn't mean it's not valuable, but it doesn't necessarily need to be integrated into the EHR. I think there's a whole world of health data that's just for you as a consumer that never needs to go into the EHR."
Managing the Data
Nonetheless, most PGHD advocates do want to see the data in the EHRs, including Valencia. The problem, he says, is refining the data into a form physicians can actually use.
"At this stage of the game, [patient data] needs to get into the EMR," Valencia said. "The last thing [doctors] need is another technology platform. The real key is integration into the EMR at the moment. Step two is how do you make all this data meaningful for a doctor? And there's a number of ways to approach it. I think the standard right now the one we see primarily, is providing the doctor with the tools to determine for themselves what's meaningful and what's not and focusing on the exceptions."
This could mean involving someone else in the process -- whether it be a nurse or a sophisticated algorithm -- to monitor the data and only bring the anomalies to a doctor's attention. Philip's IntelliBridge Enterprise eICU technology is an example of a software that analyzes several patient vitals monitors and alerts a nurse when one reading falls out of normal levels.
"I think with our capabilities, data doesn't necessarily have to go to the physician," Chuck Parker, president of the Continua Health Alliance, told MobiHealthNews. "You can have a nurse or a medical practitioner look at the data, identify those things that are concerning, and have the first line of interacting with the patient."