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Tracking and Sharing Observations for Daily Life Could Transform Chronic Care Management

Posted Mar 02 2010 7:00pm
‘Project HealthDesign’ Selects Five Teams to Test Use of Personal Health Applications to Capture and Integrate Patient-Recorded Data into Clinical Care

The Robert Wood Johnson Foundation (RWJF) today named five teams selected for an innovative program to explore how patient-recorded observations of daily living (ODLs) can be captured and integrated into clinical care. New technologies, such as smartphones and sensors, make it possible to gather information – such as diet, exercise, sleep patterns, medication usage and pain – from the flow of people’s lives. RWJF, through its Project HealthDesign: Rethinking the Power and Potential of Personal Health Records national program, has awarded a total of more than $2.4 million to five grantee teams to test whether and how information – such as the stress levels of caregivers of premature infants and medication-taking routines of seniors at risk of cognitive decline – can be collected, interpreted and acted upon by patients as well as clinicians in real-world clinical settings.

Each team will receive a two-year, $480,000 grant. Since 2006, RWJF has committed a total of $9.5 million in grant funds and technical assistance to Project HealthDesign, which is led by a team of experts working in health information technology and patient-centered care at the University of Wisconsin-Madison.

Earlier Project HealthDesign work revealed that the data needed to inform day-to-day health decisions came less often from the data contained in people’s official medical record and more from information gained by monitoring their health in everyday life. These data – on what they ate, how they slept, what their mood was, how their medications made them feel and other factors – appeared to be a valuable platform for software decision tools, or “apps,” that could help people record their data and make day-to-day decisions. Furthermore, sharing this information with their medical providers helped both parties determine how treatments were working and guide any needed adjustments.

“Data from ODLs can drive apps that help people eat better, manage their pain more effectively and understand how their behaviors, their treatments and their symptoms are related,” said Stephen Downs, S.M., assistant vice president for RWJF’s Health Group. “In addition, they can give clinicians a much richer understanding of what goes on with their patients in between office visits and then they can base their treatment recommendations on better, more comprehensive information.”

Grantee teams will work closely with patients with two or more chronic conditions to capture and store several types of ODLs and analyze and interpret the data with a goal of integrating the information into the clinical work flow. They 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.

“Patients want better relationships with their providers and a different kind of engagement with the health care system,” said Patricia Flatley Brennan, R.N., Ph.D., Project HealthDesign’s national program director. “Project HealthDesign is focused on improving the health of patients by bringing their everyday experience into the clinical encounters with their doctors and health care providers. Being able to access and selectively share health information electronically – just as people do with their financial records and other data – empowers people to be more informed patients and better consumers of health care.”

Project HealthDesign is supported by RWJF’s Pioneer Portfolio, which funds innovative ideas and projects that may lead to significant breakthroughs in the future of health and health care. Launched in 2006, nine multi-disciplinary teams, supported through program’s first round of funding, engaged in a user-centered design process to create a broad range of innovative information technology (IT) tools that addressed specific but complex disease self-management tasks – from a cell phone-enabled medication management system that alerts children with cystic fibrosis when to take their medicines to a personal digital assistant that collects and supports self-reported pain and activity data and provides a fuller picture of patients’ everyday chronic pain experiences.

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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.

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.


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