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The five research teams involved in RWJF's Project HealthDesign found that when patients used technologies such as smartphone apps, sensors, iPods, and iPads to collect information from their daily lives and share it with providers, clinical care improved. Moreover, they found that providers were willing to use the data if it was properly filtered and presented.
The Project HealthDesign teams enrolled patients all over the country in their studies. The patients were of various ages, came from different socioeconomic backgrounds, and were living with a variety of health conditions. Among the projects:
-- BreathEasy, led by a team at RTI International and Virginia Commonwealth University, worked with people with asthma and found that tracking ODLs helped patients better manage their symptoms and reduce the incidence of asthma attacks.
-- Chronology.MD, led by a team at University of California-Berkeley, the Healthy Communities Foundation, and University of California-San Francisco, worked with Crohn's disease patients. By sharing their ODL data, patients helped doctors identify the disease's triggers, significantly reducing the discomfort that accompanies this chronic condition.
[ There's almost no end to the amount of useful medical information available online. To spy seven valuable resources, see 7 Health Education Tools For Patients. ]
-- dwellSense, led by a team at Carnegie Mellon University, worked with senior adults at risk of cognitive decline. This project used sensors imbedded in pill boxes, telephones, and coffee makers to track participants' ability to successfully complete daily tasks. The team demonstrated that providers can use sensors to effectively monitor ODLs, even among low-tech populations.
-- Estrellita, led by a team at the University of California-Irvine, monitored pre-term infants. It showed that collecting ODLs helped hard-to-reach populations stay more engaged in their babies' care and kept providers on top of changes in health.
-- iN Touch, led by a team at San Francisco State University, worked with teens struggling with obesity and depression, and found that tracking ODLs helped motivate patients to minimize unhealthy behaviors. Many of the teenagers who participated lost a significant amount of weight.
The key hypothesis underlying the project was that observations of daily living--including feelings, thoughts, behaviors, and environmental factors that people interpret as health-related--can be used by doctors to improve care.
"Project HealthDesign has really awakened us to the reality that health happens everywhere, not just inside the doctor's office," said Patricia Flatley Brennan, PhD, RN, director of Project HealthDesign, in an announcement. "ODLs give us clues about how our health is progressing as we go about our daily lives. These are the insights that patients pay a lot of attention to, but ironically they almost always go unspoken at a medical appointment. This program has shown that ODLs can affect clinical care. Tracking and sharing these observations with our medical providers can meaningfully improve our health."
At an RWJF webinar that unveiled the findings, Brennan noted that there had been some problems in integrating the patient-reported data with electronic health records. Two of the researchers said they'd dealt with this challenge in different ways: Katherine Kim, a Ph.D. candidate at San Francisco State University, said the iN Touch team had created clinical summaries from the ODL data, transmitting them to EHRs and posting them on websites. Stephen Rothemich, MD, of Virginia Commonwealth University, said the BreathEasy researchers had built a clinician dashboard to show the key data, generating PDFs that could be stored in an EHR.
The main barriers to closer EHR integration, Rothemich said, were "time and money." Neither he nor Kim thought it would be difficult to find a way to combine the two data streams in the same record, although coordinating with multiple EHRs might present a bigger obstacle.
Another take-home message from the presentation: Nurses or lower-level clinicians must screen the patient-generated data and alert physicians only to significant findings. Nevertheless, the researchers reported some doctors said that they'd looked over the graphs based on ODL data to have better- informed conversations with patients during office visits.
Some of the applications used in the studies were developed by the research teams. But at least one, the ODL tracker that the San Francisco teenagers used with iPod Touch devices, was designed by a commercial vendor, TheCarrot.com.
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