Carnegie Mellon University researchers in the Quality of Life Technology Center (QoLTC) will embed wireless sensors in the residences of about 50 older adults who live alone to see if they can detect subtle changes in everyday activities that indicate the onset of dementia or physical infirmities.
The research team is one of five nationwide selected by the Robert Wood Johnson Foundation (RWJF) to explore how observations of daily living (ODLs) — what people eat, how they sleep, their mood, how their medications makes them feel and other factors — can be captured, interpreted and integrated into clinical care. Each team is receiving a $480,000 grant for the two-year project.
The Pittsburgh team, which includes colleagues from the University of Pittsburgh Department of Rehabilitation Science and Technology and Presbyterian SeniorCare, hopes to demonstrate that simple, unobtrusive sensors in residences can alert medical professionals when a person begins to lose physical or mental abilities.
“The loss of the ability to make a sandwich, dial a phone, or take medications correctly often occurs gradually and, particularly for people who live alone, insidiously,” said Anind Dey, associate professor in the Human-Computer Interaction Institute (HCII) of Carnegie Mellon’s School of Computer Science. “If we can identify this decline at an early stage, we have a chance to halt and even reverse deterioration that might otherwise result in an unsafe living situation and ultimately require the person to be institutionalized.”
In this initial stage of the research, Dey is working with Linda Kent, an occupational therapist at Presbyterian SeniorCare, western Pennsylvania’s largest provider of care and services for older adults, to identify participants. These people will be at risk of cognitive decline, have osteoarthritis and live in one of the organization’s assisted living residences. Wireless sensors will be added to such items as chairs, pillboxes and water glasses, which can then be used normally.
“Our goal is to determine not only that the resident has completed a task, such as preparing a meal, but how they went about it,” Dey said. “Did he have trouble opening a jar? Did she take longer to make dinner than usual? Were preparation steps omitted? Over time, such changes might be a signal that a professional evaluation of a person’s functional abilities is needed.” The combination of motion, contact, weight and other sensors will vary from one residence to the next, depending on the occupant’s needs and habits, he noted.
Diane Collins, assistant professor of rehabilitation science and technology at Pitt and an expert in assessing functional abilities of people with disabilities, will work with Kent to provide clinical evaluation of the participants. The other key member of the team is Matthew Lee, a Ph.D. student in HCII who specializes in behavioral and cognitive science.
The research effort is supported by the Robert Wood Johnson Foundation’s Project HealthDesign: Rethinking the Power and Potential of Personal Health Records. Earlier Project HealthDesign work revealed that the data needed to inform day-to-day health decisions came less often from information contained in people’s official medical record and more from information gained by monitoring health in everyday life.
Along with the other four teams selected for the grants, the Pittsburgh team will first participate in a refine/design phase to share ideas, establish goals and refine initial approaches. Project teams will then work with patients with complex chronic conditions to capture and interpret ODLs while establishing a relationship with a physician practice to share information. Over the 12 months, clinicians will care for 30-50 patients who are actively monitoring ODLs and assess the value of including the ODLs in their real-world care processes.
In addition, the program provides legal and regulatory compliance support to grantees and contributes to the public discourse on the legal and regulatory aspects of capturing ODLs and integrating them into care processes. The program will develop resources around the cross-cutting issues regarding use and safe integrations of ODLs as well as specifically advise grantee teams on applicable law and regulations that may alter the consequences of data-sharing between patients and clinicians.
“This project will establish a new vision of how personal health records can and should be used to strengthen the communication between a patient and the provider,” said national project director Patricia Flatley Brennan, R.N., Ph.D., of the University of Wisconsin-Madison. “Things that people notice every day, such as what they eat, how physically active they are, whether they have pain or other symptoms, are not typically captured in visits to the doctor but they are key pieces of information in managing health,” she added. “With the help of new technologies, we can now record this information and provide clinicians a more accurate and useful picture of a patient’s health and the best ways to care for them.”
Since its launch in 2006, RWJF has committed a total of $9.5 million in grant funds and technical assistance to the program, led by a team of experts working in health information technology and patient-centered care at the University of Wisconsin-Madison. Project HealthDesign is supported by RWJF’s Pioneer Portfolio, which supports innovative ideas and projects that can lead to significant breakthroughs in the future of health and health care.
Throughout the course of the program, all grantee teams will provide frequent updates about their work through the Project HealthDesign blog and other interactive features. To learn more, visit www.projecthealthdesign.org/.
Dey and Collins are researchers in the Quality of Life Technology Center, of which Presbyterian SeniorCare is an industrial partner. A National Science Foundation Engineering Research Center, the QoLTC mission is to transform lives in a large and growing segment of the population —people with reduced functional capabilities due to aging or disability. It is operated as a partnership between Carnegie Mellon and Pitt. For more information, visit www.cmu.edu/qolt/.
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About Carnegie Mellon: Carnegie Mellon (www.cmu.edu) is a private, internationally ranked research university with programs in areas ranging from science, technology and business, to public policy, the humanities and the fine arts. More than 11,000 students in the university’s seven schools and colleges benefit from a small student-to-faculty ratio and an education characterized by its focus on creating and implementing solutions for real problems, interdisciplinary collaboration and innovation. A global university, Carnegie Mellon’s main campus in the United States is in Pittsburgh, Pa. It has campuses in California’s Silicon Valley and Qatar, and programs in Asia, Australia and Europe. The university is in the midst of a $1 billion fundraising campaign, titled “Inspire Innovation: The Campaign for Carnegie Mellon University,” which aims to build its endowment, support faculty, students and innovative research, and enhance the physical campus with equipment and facility improvements.
About the Robert Wood Johnson Foundation and the Pioneer Portfolio: The Robert Wood Johnson Foundation focuses on the pressing health and health care issues facing our country. As the nation’s largest philanthropy devoted exclusively to improving the health and health care of all Americans, the Foundation works with a diverse group of organizations and individuals to identify solutions and achieve comprehensive, meaningful and timely change. The Foundation’s Pioneer Portfolio supports innovative ideas and projects that may lead to important breakthroughs in health and health care. Projects in the Pioneer Portfolio are future-oriented and look beyond conventional thinking to explore solutions at the cutting edge of health and health care. When it comes to helping Americans lead healthier lives and get the care they need, the Foundation expects to make a difference in your lifetime. Visit www.rwjf.org/pioneer.
About the University of Wisconsin: Founded in 1848, the University of Wisconsin-Madison is one of the nation’s oldest and most comprehensive public research universities, with more than 41,000 enrolled students participating in 136 undergraduate degrees, 155 master’s programs and 110 doctoral programs, and a research enterprise that generates more than $700 million in annual extramural support.
Additional Project HealthDesign Grantee Teams
RTI International and Virginia Commonwealth University
Richmond, Virginia
Asthma is a common, chronic illness, affecting over 23 million adults in this country. In addition to respiratory symptoms associated with the disease, individuals with asthma are also more likely to experience depression and anxiety. RTI International and Virginia Commonwealth University will design a personal health record application, BreatheEasy, building on the latest clinical guidelines for treatment and self-monitoring for patients with asthma and depression. Patients will interact with the application through smartphone mobile devices and biomonitors to capture and report observations of daily living (ODLs) such as use of controller and rescue medications, symptom levels, quality of life and smoking. Clinicians will utilize a Web-based dashboard providing simple analysis and visualization tools that allow them to quickly view their patients’ data, evaluate their health status and communicate any changes in treatment or monitoring. By providing a clearer picture of their health in everyday life, the ODLs will be used by both the patients and their clinicians to make lifestyle and treatment adjustments that will better manage their asthma and depression.
San Francisco State University
San Francisco, California
Youth from low-income backgrounds suffer disproportionately high rates of overweight and obesity. San Francisco State University will examine the potential of collecting observations of daily living (ODLs) via smartphones for low-income teens that are simultaneously managing obesity and depression. The project will utilize smartphone technology — wildly popular among young people — to make monitoring ODLs such as physical activity, food intake and mood easier and more convenient, thus making it more likely that they will enter the requested data at the appropriate times. In addition, the technology will allow the teens to easily share the data with their care team in order to help set health goals, track their progress and ultimately improve their physical and mental health.
University of California, Berkeley
Berkeley, California
There are 600,000 people in the United States who suffer from the digestive disorder Crohn’s disease. The disease is most prevalent in young adults aged 18 – 35 and can not only be complicated and expensive to treat but also has significant social and emotional implications. The University of California, Berkeley in partnership with The Healthy Communities Foundation and the University of California, San Francisco will help young adults who suffer from the disease create visual narratives of their condition and treatment to provide concrete feedback to providers about how they feel from day to day. The project will include patients tracking ODLs such as physical symptoms like diarrhea, bleeding, and profound weight loss, along with more complex social and emotional observations. The information will then be shared with the provider and discussed during their clinical appointments to help the patient and clinician get a more accurate picture of what’s happening between appointments with the goal of being able to reduce exacerbation of symptoms and undesired consequences of treatment, ultimately increasing the quality of the patients life and care.
University of California, Irvine and Charles Drew University
Irvine, California
Early-life health decisions for pre-term, low birth weight babies can make a big difference in how well they do down the road. University of California, Irvine and Charles Drew University will create a mobile device for collecting information from pre-term low birth weight infants and their primary caregivers that will allow them to more easily interface with their health care providers to improve care and communication. Caregivers will use a specially designed mobile device, FitBaby, to record observations of daily living (ODLs) such as the baby’s temperament, exercise, feeding and sleeping schedules, as well as the caregiver’s stress level and attitude swings. Providing nearly real-time data to clinicians will help alert them to early signs of health problems, which is crucial in treating low birth weight infants. The project is unique both in its goals of incorporating patient-generated information into a clinical setting and also because it collects information about the primary patients and their caregivers.