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Medical Device Daily Senior Staff Writer

The Robert Wood Johnson Foundation (RWJF; Princeton, New Jersey) reported that five research teams have demonstrated clear potential for improving healthcare delivery and outcomes, as well as patient engagement, through the use of personal technology. RWJF's Project HealthDesign program saw patients from around the nation use technologies such as smartphone apps, sensors, iPads and others to collect information from their daily lives and share it with their healthcare providers to see if clinical care could be enhanced.

The RWJF hosted a webinar Tuesday to demonstrate the findings from each of five teams involved with Project Health Design.

Since 2006, Project HealthDesign has led interdisciplinary teams of researchers, technology experts, clinicians and patients to develop tools to be used by real people to improve their health, better engage in their care and enhance communication with their providers. Experts at the University of Wisconsin-Madison School of Nursing have led the program since its inception. The current round of grantees began work in early 2010.

The teams involved with Project HealthDesign were guided by the hypothesis that observations of daily living (ODLs) can be applied to the clinical setting to improve care. ODLs studied in Project HealthDesign included mood and pain levels, eating habits, fussiness of infants, and other things that people notice each day as they go about their lives. Researchers worked with patients and providers to track ODLs that were meaningful to the patients, and explored how they could be incorporated into clinical care.

"The true value of personal health technology is not just to track one's health information. It's to make the data that are collected far more meaningful to patients and actionable to their providers," said Stephen Downs, chief technology and information officer at the Robert Wood Johnson Foundation. "Project HealthDesign shows that when you make it easy for people to capture information from their lives and share it with clinicians, they feel empowered to take a more active role in their health – and this engagement can lead to better outcomes."

Project HealthDesign teams found that ODLs can give providers a more detailed and accurate picture of a patient's health, facilitating better clinical treatment plans and more informed decision-making.

"Project HealthDesign has really awakened us to the reality that health happens everywhere, not just inside the doctor's office," said Patricia Brennan, PhD, RN, director of Project HealthDesign. "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." Project HealthDesign teams worked on a variety of health conditions, from asthma to Crohn's disease.

BreathEasy, led by a team at RTI International and Virginia Commonwealth University (Richmond), worked with people with asthma and found that tracking ODLs helped patients better manage their symptoms and – working in collaboration with their providers – reduce the incidence of asthma attacks.

"In our study, collecting ODL's was helpful for clinicians to monitor their patients' condition and respond appropriately to things that they saw, such as peak flows that were falling or not improving and missed medication doses," said Stephen Rothemich, MD, co-principal investigator for BreathEasy. "For chronic conditions like asthma, tracking and monitoring ODLs using every day technologies makes the 15-minute office visit more meaningful, productive and collaborative."

Chronology.MD, led by a team at the University of California-Berkeley, the Healthy Communities Foundation and the University of California-San Francisco, worked with Crohn's disease patients. By sharing their ODL data, patients helped clinicians readily identify the disease's triggers, and significantly reducing the discomfort that accompanies this chronic condition.

"One patient in our study was in constant pain and was given various tests that were inconclusive," said Nikolai Kirienko, co-project director for Chronology.MD. "Because the patient continued to track his ODLs related to pain, his doctor was able to order a colonscopy and discover a hole in the patient's digestive system causing the pain."

dwellSense, led by a team at Carnegie Mellon University (Pittsburgh), worked with senior adults at risk of cognitive decline using sensors to track their ability to successfully complete daily tasks. The team demonstrated that sensors can be used to effectively monitor ODLs, even among low-tech populations, and alert them and their medical providers to decline.

Estrellita, led by a team at the University of California-Irvine, monitored pre-term infants by working with their caregivers, and showed that collecting ODLs helped hard-to-reach populations stay more engaged in their care while enabling their providers to be alerted to changes in their 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 patients become significantly more engaged in their health and motivated to minimize unhealthy behaviors.

"The youth in our study loved the app and found it easy to record their ODLs," said Katherine Kim, co-principal investigator for iN Touch. "They used it daily and met with their health coach to discuss how they could lose weight and feel better. On average, they increased their self-confidence in managing health and reduced their waist circumference, thereby reducing their risk of Type 2 diabetes, hypertension and other obesity-related conditions."

Project HealthDesign leaders say program findings should help jump-start clinical integration of ODLs and foster more inclusion of the patient perspective in health information technology policies.

"This simple project shows that technology can fundamentally transform the provider-patient relationship by better engaging patients and improving clinical care," Brennan said. "By having more data about health in our daily lives, both clinicians and patients can work together to better manage or reduce chronic disease."

But the teams also found that integrating information about daily activities into clinical workloads is actually a bit complicated, Brennan said, and there were also technical challenges the teams encountered during the project. For example, "linking information into a clinical record remains both a technical and an organizational challenge," she told webinar participants Tuesday.

The investigators involved with the iN Touch team learned, unexpectedly, that 35% of the youth participating in the program showed depressive symptoms both at the beginning and end of the project, Kim told webinar participants. The youth involved with iN Touch did, however, show a significant reduction in waist measurement on average of 1.2 inches, and improved confidence in self-management, she said.

Kim also said iN Touch investigators worked with a youth advisory board that tested the technology and told the investigators what they thought participants would really want to do in the application.

"They said 'don't require any data entry that requires more than five clicks or five minutes'," Kim said.

Michael Christopher Gibbons, MD, National Advisory Council for Project Health Design, told webinar participants that there were several changes that happened in the health information technology world over the course of the project. For example, he said the early innovators in developing personal health record techology in the beginning were Google Health, which is now dead, and Microsoft HealthVault, which he said some would argue is currently in a comatose state.

"We've moved away from these sort of passive data systems to patient portals," Gibbons said. "In my mind, as the Project HealthDesign projects moved forward over these years, they really contributed in two main areas to helping shape the broader trends."

Gibbons said that, early on, most of the personal health record technology that existed really only allowed for the input of data that the clinicians thought were important. Meanwhile there was other types of information that patients thought were important. These projects helped health IT developers to broaden the perspective on the types of data that could conceivably be important, and also helped push the envelope on the types of devices and tools used to collect this type of data, Gibbons said.

"These projects have set the bar for developers to make vastly improved tools that will help both clinicians and patients and lead to better innovations overall," Gibbons said.

Amanda Pedersen, 912-660-2282;

Published  September 26, 2012

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