Attention Healthcare Professionals: Grants Available for Integrating Patient-Recorded Observations into Clinical Care Processes

This press release is an announcement submitted by RWJF, and was not written by Diabetes Health.

Project leaders say one of the key lessons from the initial phase was the importance that patients placed on collecting and sharing data that are not typically part of one’s medical record, but rather come from everyday life.

May 1, 2009

The Robert Wood Johnson Foundation (RWJF) has issued a call for proposals through its national program, Project HealthDesign: Rethinking the Power and Potential of Personal Health Records. Grant recipients will work to assess and test the potential of "observations of daily living" (ODLs) to help patients and physicians better manage chronic illnesses. 

A total of up to $2.4 million is available in this second round of funding to as many as five grantee teams for 24-month demonstration projects. Grants may total up to $480,000 each. Funded teams will work closely with patients and providers across different care settings. Led by a national program office based at the University of Wisconsin-Madison, the teams will demonstrate how health data from everyday life-observations such as meals, sleep, exercise levels, pain episodes and even moods-can be collected, interpreted and integrated into the clinical care process. 

Launched in 2006, Project HealthDesign last fall presented a series of novel applications that could work in tandem with personal health records (PHRs) to help patients better manage their health. Nine multidisciplinary teams, supported through its first round of funding, engaged in a user-centered design process to create a broad range of innovative IT tools that addressed specific but complex self-management tasks - from a cell phone-enabled medication management system to alert 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.  

In designing these next-generation PHR applications, grantees learned that patients want to better communicate with health care providers using technologies that are, or could seamlessly become, part of their daily routines. Project leaders say one of the key lessons from the initial phase was the importance that patients placed on collecting and sharing data that are not typically part of one's medical record, but rather come from everyday life. 

"We routinely saw people gather data on diet, exercise, sleep patterns, pain levels and many activities that give us a more accurate, meaningful picture of how people feel, day in, day out. This is powerful information that could help clinicians understand their patients better, understand how a treatment is working and adjust the treatment accordingly," said Stephen Downs, S.M., assistant vice president of RWJF's Health Group. "We're at a time when the technology has advanced enough that we can contemplate real breakthroughs in how to work with patients that suffer from chronic diseases."

During the two-year initiative, teams will work with clinical partners and patients with two or more chronic conditions to:

  • Identify, capture and store several types of ODLs for their target patient population; 
  • Analyze and interpret ODL data to extract clinically useful information; 
  • Use this information to provide feedback to patients so that they can better manage their conditions and improve their health; 
  • Enable patients to share this information with their doctors, nurses and other members of their care team; 
  • Present the information to clinicians in ways that they can easily integrate into their clinical work flow; and 
  • Identify and explain opportunities and challenges associated with this overall approach to policymakers and clinical leaders. 

"The first round of Project HealthDesign taught us that the needs of patients must be the primary drivers of technological innovation," said Project HealthDesign Director Patricia Flatley Brennan, R.N., Ph.D., professor of Nursing and Industrial and Systems Engineering at the University of Wisconsin-Madison. "When it comes to patients being active managers of their own health and health care, we learned that it's not just important to record observations from the clinical experience; personal observations of health as we go about our daily lives are equally critical. Information about how you feel and what you experience on an ongoing basis needs to be easily integrated into clinical processes because these observations reveal trends that enable care to be vastly improved and tailored to patients' realities. By allowing this type of information to be shared easily between patients and providers, we believe people will experience a different level of engagement with their health and the health care system. The result might well be better patient-provider relationships and better clinical outcomes."

Applicants for this round of funding may be either public entities, nonprofit organizations that are tax-exempt under Section 501 (c)(3) of the Internal Revenue Code and are not private foundations as defined under Section 509 (a), or for-profit entities.

Find more information on the RWJF website.

Key Dates:

April 29 and May 7, 2009 (2 p.m. ET) - Optional Web conferences for potential applicants. To register, visit www.projecthealthdesign.org 

June 3, 2009 (2 p.m. ET) - Deadline for receipt of brief proposals

July 20, 2009 - Select applicants notified if invited to submit full proposals

September 1, 2009 (2 p.m. ET) - Deadline for receipt of full proposals

December 1, 2009 - Project start date

December 16, 2009 - First design workshop

Total Award:

A total of $2.4 million is available. They anticipate grants of up to $480,000 each will be awarded to five applicants for 24-month projects.

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