Foundation increases grant to continue personal health records work

Project HealthDesign, a national program designed to support health and information technology pioneers to create a new generation of personal health records (PHR) systems, has been awarded a $5.3 million addition to its grant from the Robert Wood Johnson Foundation, bringing the project’s total funding to $10 million.

The award will allow the project that began in 2006 to continue into 2012.

“It is very exciting to receive an award that will allow us to continue developing our new vision for personal health records,” says national program director Patti Brennan, who holds professorships in UW–Madison’s School of Nursing and College of Engineering. “Our new funding will enable us to engage five grantee teams, which will demonstrate how to improve people’s health by enabling them to record, interpret and act on information about their daily living. The teams will be asked to determine how to make observations of daily living (ODLs) useful to people, as well as to integrate them into a clinical work flow as part of an ongoing treatment plan for chronic illness.”

Brennan notes that the national program office, which is based at the UW–Madison School of Nursing and has access to other campus technical capabilities such as computer engineering, is perfectly positioned to pursue the project goals.

“Project HealthDesign speaks to what’s so unique about nursing research, which strives to help individuals find ways to understand and manage their health,” she says. “The project will engage device builders as well as technology and software engineers in developing ways to make information secure. That will require a lot of creative thinking.”

Project HealthDesign’s initial goal was to design and test a suite of PHR tools and applications that work together to help people achieve their health goals in an integrated fashion. The program has been supported by the foundation’s Pioneer Portfolio, which funds innovative projects that can lead to fundamental breakthroughs in the health and health care of all Americans.

Project HealthDesign was launched in 2006, with nine interdisciplinary teams featuring innovators that brought a wide variety of backgrounds and expertise, including medical informatics, medicine and community health, computer science, media design, human systems engineering and psychology. The applications and tools they created were showcased last September at an event drawing more than 200 health information-technology professionals, in Washington, D.C.

That showcase also featured a key element of Project HealthDesign: its common platform, a set of Web-based software components that provide common, shared functions to a variety of personal health applications (PHAs). The common platform can support the grantee applications and will be available for use by others as an open-source product on the Project HealthDesign Web site by June.

The Web site will serve as an Internet library of materials that are made available with the goals of reducing personal health application implementation time and increasing interoperability as well as encouraging patient and provider accessibility to personal health applications. The common-platform components (CPCs) are currently accessed by the nine grantees as Web services. Services exist for storing and accessing observations and medication lists, as well as for providing authentication, registry and access-control functions.

With the next round of funding, observations of daily living will be emphasized as an important addition to the personal health record, testing a broad spectrum of innovations in how consumers can use information technology to better understand how they experience their health.

ODLs include data that don’t typically go into medical records but might be very informative in the clinical care of an individual, as well as in self-management of their own health. ODLs may include observational data about people’s diet, exercise, sleep, pain, medication usage and even their emotions. The next group of grantee teams will consider how to integrate observational data into the health care work flow. Implementing small trials with real patients and real care settings will be explored.

The project’s national program office put out a call for proposals in April; the proposals are due in June.