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Can Patient-Generated Data Be the Next Game-Changer in Healthcare?

June 26, 2014
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If you’re like me, you probably don’t love going to the doctor’s office. Sure, when you’re sick you want to get cured, but let’s be honest—it’s not the greatest experience in the world, especially when you  factor in that patients are now on the hook for more of their healthcare costs with rising deductibles and premiums.

As such, there is a huge opportunity that has presented itself right under the eyes of patients to better their care at a lower cost. That opportunity is in the form of digital patient-generated health data (PGHD), which is any medical data that a patient inputs electronically.

Why can be PGHD be so beneficial to healthcare? Consider that as healthcare moves to a world of performance-based care, the value of PGHD will only increase with physicians continuing to look for ways to get patient information in ways other than during clinical encounters.  As Jay Nagy, associate principal of corporate strategy for Washington, D.C.-based The Advisory Board Company recently told me, outside of the doctor’s office four walls is where health and sickness happens. We don’t get sick and healthy during our 15-minute doctor’s appointments. Rather, we get sick and healthy in the 5,000 hours that take place in between visits, Nagy says. So if the data is “right-sized”—a term he used to describe data being valuable to clinicians both in terms of importance and timing—this additional information can certainly reduce critical knowledge gaps.

It’s no secret that PGHD has become an emerging trend in healthcare. In fact, it was one of Healthcare Informatics’ Top Ten Tech Trends of 2013. In his story on PGHD, HCI Senior Editor Gabe Perna interviewed Joseph Kvedar, M.D., founder and director of the Center for Connected Health, a division of Partners Healthcare in Boston that focuses on non-traditional medical interventions, often in underserved areas, through the use of connected devices. According to Kvedar, in those 10-15 minutes that doctors see patients, “Physicians are supposed to extract a chronology of your illness from you and then I measure a few things, get a few lab tests, and that’s the package of data points I use to make a decision about you. We don’t need to do it that way anymore.”

No Dr. Kvedar, we don’t. And the federal government agrees as it continues to push the industry towards a value-based healthcare model. After all, federal payment rules penalize hospitals for patients who must be readmitted soon after a discharge. This gives hospitals an incentive to remotely monitor things such as blood pressure, glucose or weight. How is this remote monitoring taking place? With the help of PGHD. What’s more, in December, the Office of the National Coordinator for Health Information Technology’s (ONC) Health IT Policy Committee announced its intentions to include expanded requirements for hospitals and health systems to collect and use patient-generated data in meaningful use Stage 3 objectives.

 Thus, while it looks like PGHD will be a requirement for physicians, it shouldn’t even be seen as such because it really makes so much sense and falls in line with the notion of greater patient engagement, a goal that that many health systems are striving towards (and something that I recently blogged about). Again, go back to the 5,000 hours in between clinical encounters where health and sickness happens. That is the time period that we can abstract a wealth of information from.

So looking ahead, what are the next steps? The early stages of PGHD have been mostly in the form of patient portals, but there’s no reason to stop there. The wearables market is growing, yet immature—a recent survey commissioned by the Wellesley, Mass.-based mobile engagement provider Mobiquity Inc. found that 55 percent plan on using wearable tracking devices to improve their health, with that number predicted to spike in the coming years. But some research says that patients are not involving doctors in the health metrics they track. And as Nagy told me, “The demand needs to develop on the patient side. I think you will start to see that to make it more achievable and realistic for providers to accept PGHD and new ways of managing care.”

From a policy perspective, in addition to the MU Stage 3 requirements, ONC says it is currently exploring a standards and interoperability (S&I) framework initiative to identify existing standards used to indicate the origin of clinical information. As a result, receiving health IT systems could better track which aspects of a personal health record are authored by a patient versus by a health provider.

Sure, there are challenges, such as the aforementioned attempt to determine ownership of the data. Also, there are security concerns, as the information needs to be linked with its sources, especially as it moves along the care continuum. And of course providers need to find value in the data; otherwise they will see it as disrupting their existing workflows.