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Patient-Generated Data: Glass Half Empty or Half Full?

January 28, 2015
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Could frequent digital checkups replace most office visits?

Seven in 10 U.S. adults have tracked a health indicator for themselves or for someone else, according to Pew Research Center surveys. Figuring out how that data is incorporated in the care plan is important.

A few weeks ago I interviewed a Carolinas HealthCare executive about their efforts to combine data from health tracker devices with clinical data in a single dashboard for patients and providers. This week Healthcare Informatics published a great Technology Trend article written by Rajiv Leventhal. Both stories highlighted examples of health systems seeking to narrow their focus on the wearables trend to getting data that will help them manage care for people with chronic conditions first and foremost.

I saw a recent presentation hosted by the Health Data Consortium that illuminated some of the promise and challenges of patient-generated health data (PGHD). On the one hand, some clinicians are already taking advantage of PGHD in their practices, but how long will it be before that type of integration is a regular aspect of clinical work flow? And what will it take to get there?

Danny Sands, M.D., spoke about how he typically uses patient-generated data in his own primary-care practice. Dr. Sands spent 13 years at Beth Israel Deaconess Medical Center in Boston, where he developed and implemented numerous systems to improve clinical care delivery and patient engagement. He currently holds an academic appointment at Harvard Medical School and maintains a primary care practice. He described how he recently increased the dosage of a blood pressure medication and had the patient send blood pressure measurements over several days through the patient portal. Dr. Sands said he could see that the patient was doing quite well, so there was no need for him to return for another office visit soon.

“It is something I do all the time in my practice,” he said. Measurements reported from the home environment are often more accurate than those taken in the office, he said, and they help engage the patient between visits and help avert visits. In general, most people don’t want to go to the doctor’s office if they can avoid it, he said.

Avoiding extraneous visits can lead to reduced cost to the patient and to the payer. But why should Sands give up the revenue of those extra office visits? “The reality is, that is a very narrow way of thinking about healthcare,” he said. “I have lots of patients who can’t get in to see me because I see people who don’t need to be there. It takes a while to get an appointment, because all we know how to do is bring people in. Patient-generated health data improves access for other patients and increases my panel size,” he said. Increasingly he is held responsible and paid based on the panel size.

Sands said he loves patient-generated health data because it helps him better engage his patients. But is it efficient and scalable? For patient-generated data to take hold on a larger scale, it requires consideration of clinician workflow and data integration, he stressed.

We have to separate signal from noise because there is too much data coming back, he said. “We want people to exercise, but if they fed me all their Fitbit data, I would be barraged,” he said. “Show me important trends and make it actionable.”

Sands is chief medical officer of a company trying to do just that. Conversa Health has developed “digital checkups” that physicians can send to patients to find out how they are doing between office visits, using personalized questions. Patient-generated health data is then analyzed and displayed for physicians, enabling them to identify patients requiring a clinical intervention. 

“It offers frequent light touches in lieu of visits,” he said. “When biometric data comes back, we know if they are fine or if we need to reach out to them,” he said. “If we are really going to scale this, it has to be integrated with the EHR and practice management systems.” If done right, this shift promises to engage patients in their health all the time and provide benefits to practices and patient, he said.

Also on the Healthcare Data Consortium webinar was Mandi Bishop, who leads health analytics innovation and consulting for Dell Healthcare & Life Sciences. She works at the integration point between patients generating data and clinicians leveraging it. “Based on my own experience with EHR, HIE, PHR and patient portal integration, I am generally cynical about the state of health interoperability today,” she began. “I believe in the power of PGHD to transform healthcare.” She adds it should be as simple as this: I have a smartphone with an app; it connects to a wearable and connects to a web site. “Why can’t my doctor’s computer connect to that web site and use all that data?”

Transformational physicians like Dr. Sands are making this happen and sometimes they are gathering multiple sets of disparate data to complement patient monitors, wearables, portal data and EHR data, she said, “but these providers are outliers.”

With the power and promise of PGHD and with all the open technology standards in IT, you would thing meaningful PGHD integration into the design and development of clinical work flows would have been at the forefront of every single health IT company trying to differentiate itself in a saturated market, Bishop said, “but from my perspective, I can tell you that meaningful, let alone seamless, PGHD integration into the overall landscape is still the white unicorn.”