Patient-generated data is here to stay

Healthcare providers are beginning to use Apple's HealthKit software to access the growing health information collected on patients' iPhones. Hospitals see the new data exchange as a way to drive down costs and help people manage disease. Many believe that connected health will transform medicine but critics argue that the influx of data, without addressing the workflow and intervention process, could create additional problems. However, now that the federal Medicare programme fines hospitals that readmit too many patients, there is a financial incentive to track patients' health and overall well-being at home. "This is something that has tremendous potential," a medical expert said. The VP for connected health at Partners, the dominant health care provider in Massachusetts, said that several years ago it launched in-home monitoring devices that connect to a portable hub, rather than smartphones, because many patients who struggle with multiple chronic illnesses often don't own iPhones. But he did predict that widespread use of smartphones as hubs may be only two or three years away.

Dr. Bradley Crotty, director of patient portals at Beth Israel Deaconess Medical Center, demonstrates an iPhone app that relays blood pressure and weight from a patient's iPhone at home to the hospital electronic health record.

Pulse of Longwood takes you inside one of the nation’s largest hubs of hospitals and biomedical research.

Patients with heart failure could soon start beaming their body weight from bathroom scales right to their doctor’s office, as Beth Israel Deaconess Medical Center joins a growing number of hospitals experimenting with mobile technologies to track patients’ health at home.

In doing so, the 672-bed teaching hospital in Boston’s Longwood Medical Area joins the first wave of health care providers using Apple’s HealthKit software to tap into the stream of health information that patients are already collecting on their iPhones.

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Since patients are already using smartphones to track how much they step, eat, sleep, and snore, hospitals now want to seize on that data to forge a new type of remote health care that they hope will drive down costs and help people manage chronic diseases.

Over half a dozen top health care providers, including Ochsner Health System, the University of Pennsylvania, and Stanford and Duke universities, are now using HealthKit to bring patient-generated data from iPhones into official hospital records. Two major electronic health records providers, Epic Systems and Cerner, have built iPhone apps that make this easy to do. Meanwhile, a slew of startups are offering their own health apps with a similar purpose, based on smartphone technology from Apple as well as Google and Samsung.

Proponents herald a new era of connected health that will transform medicine. But critics caution that hospitals need to make sure the influx of patient data on their every step and heartbeat is secure, reliable, meaningful, and doesn’t overwhelm medical staff.

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“Most primary care doctors I know, if they get one more piece of data, they’re going to quit,” said Dr. Bob Wachter, a professor of medicine at the University of California, San Francisco.

“We have bypassed technical problems,” added Wachter, author of the best-selling book “The Digital Doctor: Hope, Hype, and Harm at the Dawn of Medicine’s Computer Age.”

“What we have not done is sort out the workflow. Where is the data going to go? Who is going to intervene?” he said.

Beth Israel Deaconess is making its foray into connected health with an app called [email protected] that can send weight and blood pressure readings right from home to the hospital. Dr. Larry Markson, vice president for clinical information systems, is one of 10 staff members who have been testing it out since the summer, using wireless bathroom scales and blood-pressure cuffs. Those data get sent directly to the electronic health record through the iPhone.

Markson said his team plans to recruit a dozen patients this year to try out the app to manage a chronic disease. The hospital will likely start with congestive heart failure — one of the most common conditions leading to hospital readmissions.

Hospitals that readmit too many patients are now penalized by the federal Medicare program, giving them an incentive to track patients’ health at home. Health care systems are also increasingly taking financial responsibility for their patients’ overall well-being through accountable care organizations and private insurance plans that shift away from the traditional fee-for-service model. Hospitals paid through these programs are rewarded when patients stay healthy.

When patients leave the hospital after being treated for heart failure, tracking weight is key, Markson said: Sudden weight gain may mean fluid is building up throughout the body because the heart is failing to pump blood efficiently.

Markson said the hospital aims to have patients step on a wirelessly connected scale once a day, and send that data to a someone — likely a nurse — who would track worrisome spikes in weight, catching problems before they become severe.

“This is something that has tremendous potential,” Markson said of the mobile technology. “Traditionally, doctors see patients in the hospital. They don’t have a great window into what’s happening the rest of the time.”

Congestive heart failure has emerged as a prime first target as hospitals experiment with remote monitoring. Ochsner, a large not-for-profit health system in Louisiana, says it saw a significant drop in readmission rates after equipping congestive heart failure patients with wireless scales for 30 days following hospitalization, according to Dr. Richard Milani, chief clinical transformation officer.

Several hundred patients have used the wireless scales in that way, he said. Ochsner started the initiative before Apple’s HealthKit came out and then switched over in 2014. HealthKit is a developer’s tool that makes it easy for third-party apps to access health data that users collect, and choose to share, on their iPhones.

“The moment HealthKit was released, it was like, oh my god, it’s the easy button,” Milani said.

Ochsner has also used wirelessly connected blood pressure cuffs to help over 120 patients who have struggled to keep their blood pressure under control, Milani said. He said it’s working: After about 90 days of weekly at-home blood pressure testing, 70 percent of these patients have controlled their blood pressure, where none had in the past.

Those findings have not been published in a peer-reviewed journal.

Ochsner has set up an “O Bar” inside a New Orleans clinic where patients buy the wireless scales, apps, and blood pressure cuffs. While 70 percent of patients have iPhones or iPads, Milani said they don’t need to — they can also buy devices that connect right to the electronic health record.

Not everyone is jumping on the mobile phone bandwagon yet. Partners HealthCare, the dominant health care provider in Massachusetts, launched in-home monitoring devices several years ago, connecting medical devices not to phones but to a portable hub that transmits the data directly to the hospital electronic health record through a cell signal. The hub is pre-paired with the medical device, so patients just have to plug it in and start taking their own blood pressure.

Dr. Joseph Kvedar, Partners’ vice president for connected health, said hundreds of patients with chronic illnesses have used remote tracking in the past few years.

“I’m not declaring victory just yet, but it’s going well,” he said.

Kvedar said Partners has not switched to using HealthKit because the patients it most wants to reach, those who struggle with multiple chronic illnesses, often don’t have iPhones or high levels of technological sophistication.

“We’re not at that point in history … where we can use mobile phones only as the hub,” he said. But he predicted that point may be as soon as two to three years away.

“There’s no other future,” he said. “Patient-generated data is here to stay.”

Also in Boston’s Longwood Medical Area, Joslin Diabetes Center has been researching apps to help patients manage diabetes by connecting data from glucose meters and insulin pens back to medical staff.

Dr. Howard Wolpert, a senior physician at Joslin who is researching mobile technologies, said platforms are just now emerging to gather the data needed, but up until now, they have required a lot of work on the patient’s part.

Eileen Hughes, who has been working with Wolpert to test a diabetes app using a monitor that continuously checks her glucose levels, said the new technology has helped her figure out which foods cause her blood sugar to spike.

She said this kind of technology could reduce doctor’s visits, but it shouldn’t replace them, in part because the data from the at-home sensor aren’t always correct.

Diabetes is such a complex condition, Wolpert added, that simply transmitting data is not enough. Diabetic patients need to know a lot about nutrition, exercise, and insulin so they can adjust their dose according to their daily activities, he said.

Continuous glucose monitors and diabetes apps “are great tools, but unless patients have the insights and the guidance to use the information,” he said, “they’re not going to realize the benefit.”