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Patient Generated Data: Insights or Nuisance?

By Joseph C. Kvedar, MD Vice President, Connected Health Partners HealthCare

Joseph C. Kvedar, MD Vice President, Connected Health Partners HealthCare

For about 10 years now, Partners Connected Health has been collecting data from patients, mostly from sensors in their environment (activity trackers, blood pressure cuffs, weight scales, etc.), trying to break free from less-than-reliable self reported data.

We’ve shown that, properly used, patient-generated data is:

• Central to improved quality of care for chronically ill patients (i.e., patients with heart failure in a telemonitoring program had significant improvement in mortality compared to controls).

• Useful in engaging patients around lifestyle choices to improve the care of both diabetes and hypertension.

• Useful in engaging patients in interventions that encourage them to improve their own care.

Despite these studies and a bevy of evidence from other investigators in the field, I still get routinely reminded, when I am out presenting on connected health, that “physicians don’t want this data.” This is a resounding theme that ranks right up there with concerns about liability and reimbursement.

On the one hand this response is predictable. Physicians’ time is squeezed more than ever these days. The thought of having to pour over reams of normal values seems daunting or even foolish. I take this objection as evidence that we aren’t clear in communicating our vision—or the true benefits of having real-time, real-world patient data available. In so many other industries, software has been designed to troll through complex data sets and cull out the meaningful relationships or events, and then presenting them succinctly as actionable information or valuable insight rather than just raw data. We can do this for patient generated data too.

"We’re supposed to be curious, to think about novel ways of providing care and above all, ways to improve care"

Then there is the objection that it is complex and costly to collect such data. Things are getting better on this front. We’ve shown that for diseases such as congestive heart failure, remote monitoring programs that use patient generated data lead to a significant drop in hospital readmissions and, more importantly, a decrease in total medical expenses. These major cost savings quickly add up, while improving the quality of care delivered. It is hard to object to that combination.

Validic (Partners HealthCare is a Validic customer), a forward-thinking company, is one example of an organization providing software that enables easy collection and normalization of all sorts of patient-generated data. The company recently came up with an exciting innovation that allows a patient to take a picture of any data-collecting device (imagine the screen on a home blood pressure monitoring device) with her mobile phone camera and have that data flow into the electronic record. This is analogous to taking a picture of your check and having it deposited in your checking account. This will lower costs significantly.

The objection that irks me the most, though, is the one that basically admits to striking out before even getting up to bat: “I don’t know what I’d do with all of those readings anyway.” This approach disappoints me in many ways. First as physicians, we’re trained in the scientific method. We’re supposed to be curious, to think about novel ways of providing care and above all, ways to improve care. Yet, some health care providers feel completely at ease that a disease as significant as hypertension can be adequately assessed by taking a few readings in the doctor’s office once or twice a year. Maybe that made sense when the sphygmomanometer (aka blood pressure cuff) was first invented. But now that these devices are ubiquitous and can be purchased in every drug store, why would we not want to take advantage of the extra data points from home readings? We made the leap for glucometers decades ago.

In my first book, The Internet of Healthy Things, I outline what I call ‘the new white coat anxiety’—the myriad concerns and changes taking place in health care today that is causing providers angst. Chief among them is apprehension to change. Change is coming from all sides: shifting payment models, changing from face-to-face interactions to virtual care, a lack of awareness about personal connected health trackers and real anxiety over what to do with all of this data.

My friend Dr. Steve Ommen, Associate Dean at the Center for Connected Care at the Mayo Clinic in Rochester, MN, told me when I interviewed him for my book: “Providers will come to see that incorporating connected care into clinical practice will be of benefit to both their practice and their patients, but it’s not the way we’ve all been trained to practice medicine for 150 years.”

Many don’t realize that when Laennec introduced the stethoscope it was ridiculed. In fact, it took 20 years for it to be accepted as a standard tool for clinical practice. The analogy may be apt, but we don’t have 20 years to wait for health care providers to embrace patient generated data. As we embrace the world of value-based provider compensation, it is imperative that we look at collecting information from and about our patients differently.

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