When Patients Share Health Info with Providers Through Personal Technologies, Clinical Care and Patient Engagement Improve

Five Project HealthDesign grantees worked with patients to record ‘observations of daily living’ and share information with providers

    • September 26, 2012

Princeton, N.J. – The Robert Wood Johnson Foundation (RWJF) today announced that five research teams have demonstrated clear potential for improving health care 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 health care providers to see if clinical care could be enhanced.

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 commenced work in early 2010.   

A key hypothesis underpinning the Project HealthDesign teams’ work is that ‘observations of daily living’ (ODLs)—the feelings, thoughts, behaviors, and environmental factors that give people clues about their health— can be applied to the clinical setting to improve care. ODLs studied in Project HealthDesign include 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 J. Downs, chief technology and information officer at RWJF. “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 Flatley 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:

  • 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—working in collaboration with their providers—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 clinicians readily identify the disease’s triggers, significantly reducing the discomfort that accompanies this chronic condition.
  • dwellSense, led by a team at Carnegie Mellon University, 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.

Project HealthDesign leaders say program findings should help jumpstart clinical integration of ODLs and foster more inclusion of the patient perspective in health information technology policies. They also say that the program results may further fuel development of consumer-friendly apps that help patients track observations that they believe are important to their health—and share them securely with their providers.

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

For more information about Project HealthDesign or to learn more about what the research teams learned, visit www.ProjectHealthDesign.org.

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NOTE: Quotes from each Project HealthDesign grantee follow.

BreathEasy

“In our study, collecting ODLs was helpful for clinicians to monitor their patients’ conditions and respond appropriately to things that they saw—such as peak flows that were falling or not improving and missed medication doses. For chronic conditions like asthma, tracking and monitoring ODLs using everyday technologies makes the 15-minute office visit more meaningful, productive, and collaborative.”

-Stephen Rothemich, MD, co-principal investigator for BreathEasy

Chronology.MD

“One patient in our study was in constant pain and was given various tests that were inconclusive. 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.”

-Nikolai Kirienko, co-project director for Chronology.MD  

dwellSense

“Using a low-cost innovation like sensors, we were able to monitor the cognitive ability of low-income seniors living alone. Incorporating technology into vulnerable populations—particularly those not tech-savvy—can be difficult, but we were able to do it and show how it could be effective.”

-Anind Dey, PhD, principal investigator for dwellSense

Estrellita

“It’s easy for pre-term infants to get lost in the health care system. What we were able to do with our app is help their caregivers track their ODLs and share the data with their clinicians to monitor their progress, but also keep track of their numerous appointments, which can be overwhelming for caregivers of pre-term infants.”

-Gillian Hayes, PhD, co-principal investigator for Estrellita

iN Touch

“The youth in our study loved the app and found it easy to record their ODLs. 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."

-Katherine Kim, MPH, MBA, PhD candidate, co-principal investigator for iN Touch

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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 health and health care, the Foundation works with a diverse group of organizations and individuals to identify solutions and achieve comprehensive, measurable, and timely change. For 40 years, the Foundation has brought experience, commitment, and a rigorous, balanced approach to the problems that affect the health and health care of those it serves. 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. For more information, visit www.rwjf.org. Follow the Foundation on Twitter www.rwjf.org/twitter or Facebook www.rwjf.org/facebook.