Top Ten Tech Trends: Transforming Patient-Generated Data into Decision Support

Sept. 10, 2014
Patient-generated data is rapidly emerging consumer-driven trend thanks to the rise of connected devices. Soon it could be a requirement under Stage 3 of meaningful use. Whether they like it or not, physicians may have to pay attention to their patients’ FitBit data.

To Joseph Kvedar, M.D., it’s time to change the way healthcare provider organizations have given care, which he says has basically stayed the same since the ancient days of Hippocrates.

“You come to visit a doctor for a 10- to 15-minute period of time a couple of times per year, maybe more if you are sick. During that time, I’m 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,” says Kvedar, who is the 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.

Joseph Kvedar, M.D.

The forward advance of patient-facing connected technology, Kvedar surmises, will allow these healthcare providers to track patient-generated health data (PGHD), and thus the patients themselves, on a continuous basis. For the patients, use of these tools, be it a remote monitor connected to a device, a phone or mobile application with a sensor, or even a platform that allows patients to self-report data, is becoming more common.

Accenture, a New York City-based global management consulting company, recently conducted a survey of more than 6,000 people in six countries, and found that more than half are interested in buying wearable technologies such as fitness monitors for tracking physical activity and managing their personal health. Another survey, quoted in a data brief put out by the Office of the National Coordinator for Health IT (ONC) found that 30 percent of consumers were eager to use smartphones and tablets to manage their health.

This interest has created a burgeoning market for personal health and wellness devices. According to the Consumer Electronics Association (CEA), more than 40 million of these kinds of devices sold in 2013. By 2018, that number is expected to jump up to more than 70 million sold, reaching $8 billion in total sales. 


By 2018, these technologies could also be very well could be integrated with clinical data at provider organizations across the country, especially if Chuck Parker has his way. Parker is the executive director of the Continua Health Alliance, a 200-member nonprofit organization that is working to establish interoperability within the personal connected health space. 

Continua is one of eight industry groups that sent a letter to the Vice Chairman of the ONC’s Health IT Policy Committee (HITPC) asking to formally require eligible providers and eligible hospitals to use and integrate PGHD into the electronic health record (EHR) as part of Stage 3 of meaningful use.  “The desire of the patient-generated data is that it’s a richer data set, it allows us to connect and follow the individual much more closely, it becomes easier to manage because it’s machine to machine,” Parker says.

Chuck Parker

The members of the HITPC, for their part, have recommended the inclusion of PGHD in Stage 3. When pressed on whether or not it could be in Stage 3, Jodi Daniel, the director of the Office of Policy and Planning at ONC, says the office is waiting on the formal recommendations from HITPC on this inclusion. She says the HITPC’s Consumer Empowerment Workgroup and the Consumer Technology Workgroup are providing input on what standards could be used and future opportunities.

“We’ve been working closely with folks on those committees to think about what the next steps might be,” Daniel says.

Jodi Daniel

Before that happens, certain elements still need to be worked out, those aforementioned standards being priority number one, according to Mary Griskewicz, senior director of health information systems at the Health Information and Management Systems Society (HIMSS). She says there needs to be reconciliation between the provider community and the patients with what’s possible and doable based upon those standards and interoperability of the data.

Parker says, however, that from a technical standpoint, the standards are there through the consolidated care document (CCD), an HL7 clinical document architecture (CDA) standard that enables connectivity between the two sources. While some personal health data device companies are using propriety architecture (such as the FitBit from San Francisco), many are using that CDA standard. Furthermore, he says Continua is working with the Food and Drug Administration (FDA) to craft standards requirements and guidance around mobile medical devices.

In a sense, a lot of the success of this integration hinges on practicality. “Realistically, 90 to 95 percent of this data is not really relevant on a daily basis,” says Parker.  This means provider organizations will have to get physicians on board and promise that this won’t just create an “avalanche” of new, useless data. He says this means having them work within the EHR with clinical decision support tools to understand that data at a larger trend level and with the care teams to find the most pertinent data points.

In that sense, ONC’s Daniel says, there are also concerns from the provider side with how this data would integrate into a physician’s workflow. Others, including ONC within that data brief, have expressed apprehension over the privacy and security of transmitting this data.


Despite the hurdles that exist and lie ahead, there are examples of provider organizations already using PGHD in conjunction with clinical data. While many in the industry are doing this through patient portals, a select few are going beyond that. 

Banner Health, an integrated health system based in Phoenix, which operates 23 hospitals and other healthcare entities in seven states, is remotely monitoring a population of high-risk patients with tablets and various devices that track vital signs like blood pressure on a long-term basis and send them to a hub that connects to the Banner EHR. The tablets are designed to keep the Banner physicians updated on the patients continuously and in frequent contact. The project, called iCare, has been ongoing since June.

Though it’s early, Edward Perrin, M.D., who works as a primary care intensivist with the Banner iCare project, says that PGHD, when properly organized, can be unquestionably be useful to physicians. “One [measure] of blood pressure does not equal how [the patient’s] blood pressure is trending over the course of weeks and months. The snapshots and cross sections we get from a hospital setting are very abnormal and atypical for what a patient is doing at home. That’s what you need to focus on, managing them at home and what they are doing there,” he says.

At Connected Health, Kvedar and his team patients are using PGHD to engage underserved patients. Using data from a pedometer to track a patient’s activity, paired with data based on a questionnaire they filled out and where their doctors are located, the Connected Health team created a series of automated, motivated text-message interventions designed to keep them active. While many are still trying to understand the true clinical value of what this kind of data can accomplish, those like Kvedar recognize its potential worth.

“It’s not clear yet how you enter steps counts into an electronic record, except to say that clinicians will all tell you if you have diabetes, are overweight, have metabolic system, it’s better if you are more active. Just being able to assess person’s activity is a new and exciting tool for preventive care,” Kvedar says.

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