The Robert Wood Johnson Foundation (RWJF) has just selected five teams for an innovative program to explore how patient-recorded Observations of Daily Living (ODL) can be captured and integrated into clinical care. New technologies such as smart phones and sensors make it possible to gather information on diets, exercise, sleep patterns, medication usage, and pain, and then use the information to study the effects on people’s lives.
RWJF through their “Project HealthDesign: Rethinking the Power and Potential of Personal Health Records” program awarded more than $2.4 million to five grantee teams. For example, these teams are going to look at the stress levels of caregivers for premature infants and how this can be of value to clinicians. They are also going to study how medication-taking routines for seniors at risk of cognitive decline can be collected, interpreted, and acted upon by patients as well as by clinicians in real world clinical settings. Each team will receive a two year $480,000 grant.
“Data from ODLs can drive apps to help people eat better, manage their pain more effectively, and understand how their behaviors, their treatments, and their symptoms are related,” said Stephen Downs, 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 between office visits and so that treatment recommendations will be based on more comprehensive information.”
Grantee teams will work closely with patients with two or more chronic conditions to capture and store several types of ODLs. The teams will analyze and interpret the data to integrate the information into the clinical work flow. The teams will first participate in a refine/design phase to share ideas, establish goals, and refine initial approaches. Over the 12 months, clinicians will care for 30-50 patients while 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 grantee teams include:
• Carnegie Mellon University (Pittsburgh) will develop and evaluate new technologies to monitor the routine of older individuals with arthritis and at risk for cognitive decline to provide the data for long term functional assessment and treatment
• RTI and Virginia Commonwealth University (Richmond Virginia) will design a personal health record application, “BreathEasy” to build on the latest clinical guidelines for treatment and self monitoring for patients with asthma and depression. Clinicians will use a web-based dashboard that will provide them with simple analysis and visualization tools
• San Francisco State University (San Francisco) will examine the potential for collecting ODLs via smart phones for low income teens that are simultaneously managing obesity and depression.
• University of California (Berkeley) in partnership with “The Healthy Communities Foundation” and UCSF will help young adults who suffer from Crohn’s disease create visual narratives of their condition and treatment to provide concrete feedback to providers on how they feel from day to day.
• University of California, Irvine and Charles Drew University (Irvine California) will create a mobile device to collect information from pre-term low birth weight infants and their primary caregivers to allow them to more easily interface with their healthcare providers. This specially designed mobile device “FitBaby” will record ODLs from the babies and provide the nearly real time data to clinicians to help alert them to early signs of health problems